Podcasts about advancing translational sciences

In a medical first, a team at Children's Hospital of Philadelphia and Penn Medicine has successfully treated an infant diagnosed with a rare genetic disorder by using a customized CRISPR gene editing therapy. The work, led by Penn Medicine's Kiran Musunuru and CHOP's Rebecca Ahrens-Nicklas, points to the potential to use bespoke gene editing therapies to treat others with rare genetic diseases for which no available medicines exist. We spoke to P.J. Brooks, deputy director of the Office of Rare Disease Research at the National Institutes of Health's National Center for Advancing Translational Sciences, about the breakthrough treatment, how the researchers were able to move from diagnosis to treatment with great speed, and what it would take to scale such an approach.

In this episode, Lillian Erdahl, MD, FACS, is joined by Peter C Minneci, MD, FACS, MHSc, from the Department of Surgery, Nemours Children's Health, Delaware Valley. They discuss Dr Minneci's recent article, “Cost-Effectiveness of Nonoperative Management vs Upfront Laparoscopic Appendectomy for Pediatric Uncomplicated Appendicitis Over 1 Year,” in which the authors found that cost-effectiveness of management of pediatric appendicitis is sensitive to changes in utilities achieved by nonoperative management. Further studies should investigate reasons for treatment failure and the importance of shared decision-making in choosing treatment.   Disclosure Information: Drs Erdahl and Minneci have nothing to disclose. This research was funded by the Patient-Centered Outcomes Research Institute (PCORI ID CER-1507-31325) and the National Center for Advancing Translational Sciences (grant UL1TR001070). CME for this episode will be available on January 31, 2025. To earn 0.25 AMA PRA Category 1 Credits™ for this episode of the JACS Operative Word Podcast, click here to register for the course and complete the evaluation. Listeners can earn CME credit for this podcast for up to 2 years after the original air date. Learn more about the Journal of the American College of Surgeons, a monthly peer-reviewed journal publishing original contributions on all aspects of surgery, including scientific articles, collective reviews, experimental investigations, and more. #JACSOperativeWord

Featured ResearchersMarwah Farooqui, DOAssistant ProfessorDepartment of Medicine, Division of Hematology & OncologyUIC College of MedicineGelila Goba, MD, MPH, FACOGAssociate ProfessorDirector of the Global Women's Health FellowshipDepartment of Obstetrics and GynecologyUIC College of MedicineLewis Hsu, MD, PhDProfessorDirector of Pediatric Sickle Cell CenterProfessorDepartment of Pediatric Hematology & OncologyUIC College of MedicineImplementation Science Resources:EPIS FrameworkNIH Implementation Science Methodologies and Frameworks   If you would like to see your interdisciplinary team featured on the podcast, reach out to me at laurenw@uic.edu. Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch.The University of Illinois Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

FEATURED RESEARCHERAlex Leow, PhDProfessor of Psychiatry University of Illinois ChicagoOn X @alexfeuillet and LinkedInFEATURED PARTNERGregg F. Martin, PhDMajorGeneral, U.S. Army (Ret.)Author of Bipolar General: My Forever War with Mental IllnessOn X @GenGreggMartin & LinkedIn If you would like to see your interdisciplinary team featured on the podcast, reach out to me at laurenw@uic.edu.Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch. The University of Illinois Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

FEATURED RESEARCHERAlex Leow, PhDProfessor of Psychiatry University of Illinois ChicagoOn X @alexfeuillet and LinkedInFEATURED PARTNERGregg F. Martin, PhDMajorGeneral, U.S. Army (Ret.)Author of Bipolar General: My Forever War with Mental IllnessOn X @GenGreggMartin & LinkedIn If you would like to see your interdisciplinary team featured on the podcast, reach out to me at laurenw@uic.edu.Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch. The University of Illinois Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

FEATURED PARTNERGregg F. Martin, PhDMajor General, U.S. Army (Ret.)Author of Bipolar General: My Forever War with Mental IllnessREFERENCED MATERIALNIMH Understanding PsychosisNIMH Bipolar DisorderMisdiagnosis Rates If you would like to see your interdisciplinary team featured on the podcast, reach out to me at laurenw@uic.edu.Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch.The University of Illinois Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

FEATURINGMajor General Gregg Martin, PhD (retired)The Bipolar General: My Forever War with Mental Illness The University of Illinois Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Emerging technologies are poised to greatly impact federal agencies. In health care and health research, this is unlocking tremendous opportunity for researchers advancing treatments, diagnostics and more. The National Center for Advancing Translational Sciences's five-year plan outlines how AI and machine learning will address big data and translational barriers. This plan aims to bridge the gap between scientific and operational challenges by improving engagement in the translational space as well as serve as a guide to other agencies when it comes to preparing for future health emergencies like COVID-19. NCAYS Branch Chief of the Office of Policy, Communications and Education Dr. Meredith Temple O'Connor briefs us on this plan plus the expansion of the N3C program comprising COVID clinical data, how AI is shortening the diagnostic odyssey for rare diseases and what's going on with its new partnership with ARPA-H.

Dr. Joni L. Rutter, Ph.D., ( https://ncats.nih.gov/director/bio ) is the Director of the National Center for Advancing Translational Sciences ( NCATS - https://ncats.nih.gov/ ) at the U.S. National Institutes of Health (NIH) where she oversees the planning and execution of the Center's complex, multifaceted programs that aim to overcome scientific and operational barriers impeding the development and delivery of new treatments and other health solutions. Under her direction, NCATS supports innovative tools and strategies to make each step in the translational process more effective and efficient, thus speeding research across a range of diseases, with a particular focus on rare diseases. By advancing the science of translation, NCATS helps turn promising research discoveries into real-world applications that improve people's health. The NCATS Strategic Plan can be found at - https://ncats.nih.gov/strategicplan In her previous role as the NCATS deputy director, Dr. Rutter collaborated with colleagues from government, academia, industry and nonprofit patient organizations to establish robust interactions with NCATS programs. Prior to joining NCATS, Dr. Rutter served as the director of scientific programs within the All of Us Research Program, where she led the scientific programmatic development and implementation efforts to build a national research cohort of at least 1 million U.S. participants to advance precision medicine. During her time at NIH, she also has led the Division of Neuroscience and Behavior at the National Institute on Drug Abuse (NIDA). In this role, she developed and coordinated research on basic and clinical neuroscience, brain and behavioral development, genetics, epigenetics, computational neuroscience, bioinformatics, and drug discovery. Dr. Rutter also coordinated the NIDA Genetics Consortium and biospecimen repository. Throughout her career, Dr. Rutter has earned an international reputation for her diverse and unique expertise via her journal publications and speaking engagements, and she has received several scientific achievement awards, including the 2022 Rare Disease Legislative Advocates–RareVoice Award for Federal Advocacy and the 2022 FedHealthIT–Women in Leadership Impact Award. Dr. Rutter received her Ph.D. from the Department of Pharmacology and Toxicology, Dartmouth Medical School, Hanover, New Hampshire, and completed a fellowship at NCI within the Division of Cancer Epidemiology and Genetics. Support the show

The National Institutes of Health in November named Joni Rutter Director of the National Center for Advancing Translational Sciences. Rutter had served as acting director since April 2021. She succeeded Chris Austin, the first permanent director of NCATS, who stepped down after ten years on the job. NCATS is charged with developing technologies and approaches to accelerate the process of moving new treatments from the lab to the patient. As part of its work, it has several program and initiatives that are focused specifically on rare diseases. We spoke to Rutter about NCATS' priorities under her leadership, the challenges of translational science, and where she sees the biggest opportunities for accelerating the discovery and development of therapies for rare diseases.

FEATURINGDr. Katrine WallaceTwitter @DrKatEpiTikTok @epidemiologistkatJacqueline CareyTwitter @JCareyUICMichael WesbecherTwitter @ThisIsUICAnd me, Lauren RiegerTwitter @UIC_CCTS If you would like to see your interdisciplinary team featured on the podcast, reach out to me at laurenw@uic.edu.Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch.The University of Illinois Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

FEATURED RESEARCHERSMarc Atkins, PhDProfessor of Psychiatry and Psychology Director, CCTS Community Engagement and Collaboration CoreGrace CuaSenior Research Specialist, CCTS Community Engaged Collaboration CoreGraduate Student, Educational psychology, UICFEATURED PARTNERJim PooleChief integration OfficerNAMI Chicago To learn more about burnout, you can read this 2016 article from World Psychiatry. If you would like to see your interdisciplinary team featured on the podcast, reach out to me at laurenw@uic.edu.Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch.The University of Illinois Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

NCATS is the National Center for Advancing Translational Sciences. It's an arm of the National Institutes of Health, and it funds entities nationwide, including the CTSI in our community. Discover how NCATS is where science goes to become health...inside this edition of CTSI Discovery Radio!

FEATURED RESEARCHERSClaire Decoteau, PhDProfessor, Department of SociologyCollege of Liberal Arts & SciencesUniversity of Illinois ChicagoIván ArenasAssociate DirectorInstitute for Research on Race and Public PolicyUniversity of Illinois at ChicagoLEARN MORE“Deadly Disparities in the time of COVID-19: How Public Policy Fails Black and Latinx Chicagoans,” December 2021View panel discussions from 12/01/2021 and 12/09/2021UIC Institute for Research on Race and Public Policy If you would like to see your interdisciplinary team featured on the podcast, reach out to me at laurenw@uic.edu.Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch.The University of Illinois Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. 

FEATURED RESEARCHERAlex Leow, MD, PhDProfessorDepartments of Psychiatry and BioengineeringUniversity of Illinois ChicagoTwitter: @alexfeuilletBiAffect Project: https://www.biaffect.comSteve Jobs' Stanford Commencement Speech: https://news.stanford.edu/2005/06/14/jobs-061505 If you would like to see your interdisciplinary team featured on the podcast, reach out to me at laurenw@uic.edu.Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch.The University of Illinois Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

The authors of four separate studies on the economic burden of rare diseases recently collaborated on piece in Health Affairs calling for concrete steps to address gaps in data that make it difficult to track rare diseases in the healthcare system. Though the authors came to similar conclusions in their reports, they were also stymied by existing data constraints, such as a lack of codes for rare diseases, differing data structures of electronic health records, and missed opportunities to gather data through public health surveys. We spoke to Joni Rutter, acting director of the National Center for Advancing Translational Sciences; and Annie Kennedy, chief of policy and advocacy for the Everylife Foundation for Rare Diseases, about the economic burden of rare diseases, the data constraints that limit a complete understanding of the impact they have, and what steps can be taken to improve the availability of patient data.

FEATURED RESEARCHERSNaoko Muramatsu, PhDProfessor, Community Health SciencesUIC School of Public HealthTwitter:  @naoko_muramatsuLinkedIn BioKelly Quinn, PhDClinical Associate ProfessorDepartment of CommunicationUIC College of Liberal Arts & ScienceTwitter: @_kquinn_ David Marquez, PhDProfessorDepartment of Kinesiology and NutritionUIC College of Applied Health SciencesTwitter: @DrDavidMarquezMarquez LabJessie Chin, PhDAssistant ProfessorSchool of Information SciencesUniversity of Illinois Urbana-ChampaignChin Lab If you would like to see your interdisciplinary team featured on the podcast, reach out to me at laurenw@uic.edu.Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch.The University of Illinois Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. 

FEATURED RESEARCHERSAmy Lasek, PhDAssociate ProfessorDepartments of Psychiatry and Anatomy and Cell BiologyUniversity of Illinois at Chicago College of MedicineGregory Thatcher, PhDProfessor, Pharmacology and ToxicologyR. Ken and Donna Coit Endowed Chair in Drug DiscoveryR. Ken Coit College of Pharmacy, University of ArizonaManel Ben Aissa, PhDResearch Assistant Professor, Department of Pharmaceutical SciencesAssistant Director, UICentreUniversity of Illinois at Chicago College of Pharmacy To learn more about the UICentre, visit https://centre.pharmacy.uic.eduLearn more about the CCTS Pilot Grant program at ccts.uic.edu/funding If you would like to see your interdisciplinary team featured on the podcast, reach out to me at laurenw@uic.edu.Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch.The University of Illinois at Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Dr. Ilyas Singeç is the Director of the Stem Cell Translation Laboratory at the National Center for Advancing Translational Sciences, where he leads a group of scientists working to address efficiency, reproducibility, scalability, and other roadblocks in the translation of iPSCs into therapies. He discusses the standardization of stem cell differentiation, high-throughput cell culture, personalized medicine, and the potential for biomanufacturing in space.

Dr. Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Rob Cavanaugh of the University of Pittsburgh, about dosage in delivering aphasia treatments, and about the difference between dosage in research settings and dosage in clinical settings.       In today's episode you will hear about: The concept of voltage drop, its definition, and how it applies to aphasia rehabilitation, Opportunity cost and factors that affect the ability to deliver a treatment protocol with fidelity to the research evidence, and Mindful clinical decision-making to assure delivery of the best and most efficient treatment possible within existing clinical parameters.     Janet Patterson: Welcome to this edition of Aphasia Access Podversations, a series of conversations about community aphasia programs that follow the LPAA model. My name is Janet Patterson, and I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California. Today I am delighted to be speaking with my friend and an excellent researcher, Rob Cavanaugh, from the University of Pittsburgh. Rob and I have had several conversations about aspects of aphasia rehabilitation, beginning when he was a Student Fellow in the Academy of Neurologic Communication Disorders and Sciences. Our conversation today centers on a topic we both have been thinking about, dosage and aphasia treatment.    As Rob and I start this podcast, I want to give you a quick reminder that this year we are sharing episodes that highlight at least one of the gap areas in aphasia care identified in the Aphasia Access White Paper, authored by Dr. Nina Simmons-Mackie. For more information on this White Paper, check out Podversations Episode 62 with Dr. Liz Hoover, as she describes these 10 gap areas, or go to the Aphasia Access website.    This episode with Rob Cavanaugh focuses on gap area 4 - Insufficient intensity of aphasia intervention across the continuum of care. Treatment intensity is not a singular concept, but rather has several components to it, including decisions about dosage. Much has been written about intensity in aphasia rehabilitation, however, as yet there is no clear and convincing argument about what, exactly, is the best intensity for delivering an aphasia treatment to an individual with aphasia. I hope our conversation today can begin to shed some light on this topic.    Rob Cavanaugh is a third year Ph.D. candidate in the Department of Communication Sciences and Disorders at the University of Pittsburgh. Before moving to Pittsburgh, he worked as a clinical speech-language pathologist in Charlotte, North Carolina, in outpatient and inpatient rehabilitation settings. His research interests focus on identifying implementation gaps in aphasia rehabilitation, improving patient access to therapy services through technology, improving treatment outcomes, and advancing statistical methods used in aphasia research. Rob received his master's degree in Speech and Hearing Sciences from the University of North Carolina at Chapel Hill. He is currently doing interesting work at Pitt, and I look forward to our conversations, Rob, today and in the future. Welcome, Rob to Aphasia Access Podversations.   Rob Cavanaugh: Thanks Janet, it's great to be here, and I'm really excited to talk about dosage and aphasia treatment.    Janet: Great! I think the only thing I'm going to have to worry about Rob, is keeping us contained because we could probably talk for days on this subject, and our listeners would get tired of hearing us.    Rob: That is definitely true.   Janet: Today, as I said, Rob, I'd like to talk to you about dosage and aphasia treatment.  You and your colleagues recently published a paper in AJSLP that compared dosage in research papers and dosage in clinical practice. The team did great work, and I think it's an impressive paper. As we try to create an effective and efficient treatment program for our clients with aphasia, one of the elements we consider is dosage of the treatment we select. Simply defined, dosage can be thought of as the amount of treatment provided at one time, how often that treatment is provided, and the length of time the treatment lasts. We sometimes hear the terms session length, frequency and duration. Would you agree with that definition, Rob?    Rob: Thanks, Janet. I'm really excited about this work, and I want to take a minute to acknowledge the research team on this project before we really get into dosage because it really was a big team effort. Christina Kravetz is a clinical speech language pathologist here in Pittsburgh, Yina Quique, who is now a postdoctoral fellow at Northwestern, Lily Jarold who is now working on her clinical master's degree at the University of South Carolina, and Brandon Nguy who I think you had on an Aphasia Access Podversations a couple weeks ago to talk about his presentation and some of his work analyzing demographic trends in these data. I should also acknowledge our funding sources, which include the School of Health and Rehabilitation Sciences here at Pitt, and the National Center for Advancing Translational Sciences.   I think that's a good definition to get us started talking about dosage. We know that the amount of treatment is most often reported in terms of time, how many minutes in a treatment session, or how often sessions occur, or how many total sessions are there. But perhaps I can add one more dimension to our discussion about dosage, which is that it's not just how much treatment occurs in terms of time, but also what the treatment is made up of, what are the activities that we're doing within the treatment? How many times do we do them in a session? Or how many times do we do the activities per hour of treatment? As much as I'd like to think of dosage and aphasia treatment as an analogy to taking an antibiotic, such as when you have strep throat or some infection, you take 250 milligrams twice a week for two weeks. Dosage in aphasia rehabilitation is probably not that straightforward, right? Our treatments are complex and holistic and answering questions like how much of something gets really tricky really quickly.   Janet: I can imagine, and you know, when we first started talking about dosage several years ago, people used exactly that analogy. It's hard to appreciate that analogy because therapy is not this little unit of a pill or a tablet, it's a complex interaction between people. When we think about dosage, sometimes as clinicians we can decide dosage for our treatment, but sometimes it may be imposed upon us by an external source, such as our workplace or healthcare funder. And while it's important that we take guidance from the literature to determine dosage, I am not sure that that always happens. Rob, you are both an aphasia clinician and an aphasia researcher, how did you get interested in thinking about dosage as it relates to aphasia treatment?   Rob: I am a clinician by training, and that's really the viewpoint with which I started. Like you mentioned, I worked primarily in outpatient rehab settings, where most of the individuals who came into our clinic were home from the hospital, and they were working to recover from a recent stroke or traumatic brain injury or brain cancer, or some similar life-changing event. I think you're right, that practical dosage in a clinical setting like this is some combination of the clinical decision-making that we do as expert speech-language pathologists, and then all of these real-world constraints around us such as insurance, clinician availability, or the client's ability get to the clinic on a regular basis. I was fortunate to have excellent mentors and I'm going to acknowledge them. MaryBeth Kerstein, and Lisa Hunt and Missy Davis at Carolinas Rehab, were expert clinicians for me as a novice coming in. They really knew how to navigate their clinic, what they wanted to do from a clinical standpoint, and then what they were looking at in the insurance paperwork, and what to do when the patient said, “Well, I can only get here once a week”. My interest in dosage really comes from the perspective of, I've got this treatment, and it requires a lot of dosage and I want to fit it into a very narrow window of time. As a clinician you're grateful to have twice weekly sessions for six or eight weeks, and then you read a treatment study and it said that it provided treatment for 20 or 30, or even 60 hours. That's really hard to do in practice. So you know, we want to be confident that if I'm going to go with a treatment, if I'm going to choose it, I'm not wasting someone's time because I don't have enough of it for the treatment to be effective. And I'm also not wasting time by doing too much of it.   Janet: That's so important to think about Rob. You also mentioned something else, patient characteristics. Can an individual get to the clinic as much as they need to? Are they motivated to participate in this treatment? Those pieces must factor into your decision as well.   Rob: Sure, and you know, I think about some of our really high intensity treatments. Here at the Pittsburgh VA, we recently completed an ongoing study of semantic feature analysis which provides 60 hours of SFA. That's a lot of time to be doing a single treatment and so certainly motivation is a really important piece that we have to fit into the conversation about dosage.   Janet: As an aside, I'm sure you know, we're doing some investigation into motivation and what it means and how it works and how we can best use it in treatment, but it certainly is part of the decisions that you make when you when you select a treatment. I am glad that you're thinking about these pieces, because they're all focused on getting the most effective, efficient treatment that we can for a patient, and you're right, not wasting time or resources.    In your recent publication, Rob, you approach the topic of treatment dosage by identifying the gap between the dosage reported in research studies and the dosage used in clinical practice. By the way, the link to that paper is at the end of these Show Notes. It appeared in AJSLP so our listeners can access that paper and read your work for themselves. In that paper, you and your colleagues use the term voltage drop to describe this difference between research and clinical application. Will you explain the term voltage drop to us and describe how you see its relevance to aphasia treatment?   Rob: Sure, so voltage drop is this idea that when you take an intervention that worked in a controlled research setting, and we saw some good results, and then you implemented that scale in the real world. You give it to clinicians and while they might use it in their clinical practice, there can be a reduction in how effective that intervention is, right? The real world is messy, it's often hard to implement the research protocol with high fidelity, or there are good reasons to alter the protocol for individual situations, but we don't know how those alterations might affect the outcomes – this is voltage drop. This idea has been around in the implementation science literature for quite some time. I actually first heard this term on another podcast called Freakonomics, which is very different from what we're talking about today. It was in the context of how do you scale up social interventions like universal pre-kindergarten, and the challenges that come with finding something that works in one situation and trying to bring it to the whole country? And I thought, “Oh, this is exactly what I've been worrying about in our clinical practice world.” How do we take something that works in a small, controlled setting and make it work in larger settings throughout the country, in clinical settings? The term voltage drop seemed like a great way to motivate the conversation in our paper about dosage. If we can't implement the same dosage in clinical practice that we see in research, we could see a voltage drop in our treatment effectiveness for people with aphasia.   Janet: Right. I like that that term. Rob, as I was listening to you talk about this term voltage drop, it reminded me of phases in research, where you start out by demonstrating that the technique works in a research environment, and then moving it to a clinical environment to see exactly how it does work. I also thought about how we as clinicians need to be mindful that when we implement a treatment, if we can't meet the conditions in the research treatment, if we aren't taking into consideration this potential voltage drop as we implement treatment, we may not be doing the best job for patients. Does that make sense to you?   Rob: Yeah, I think it's a really hard balance as a clinician. You might have treatment which you feel like would be particularly helpful for someone. But the literature says this treatment has been implemented for 30 or 40 or 60 hours in the research lab and you're looking at the paperwork for this person which says that they have 20 visits, and you're wondering how you're going to make that work? Should you use a different treatment that doesn't seem to have as much dosage in the literature, or should you try to fit that treatment into what you have with that person? I think those are questions we don't have good answers to yet and clinicians struggle with all the time.   Janet: Which leads me to my next question for you. As clinicians recognizing the situation, how should we use this concept of voltage drop as we determine an individual's candidacy for a particular aphasia treatment technique, and determine treatment dosage in our own clinical settings? That's a loaded question, by the way!   Rob: That's a great question. I think this area of research has a long way to go before we really have any definitive answers. I think this idea of voltage drop right now perhaps is just something that can play a role in our clinical decision-making process when we go about implementing the aphasia treatment literature with our clients on a daily basis. For example, we often deviate from the evidence base in ways we think will improve our treatment outcomes, right? We personalize our treatment targets so that they're motivating and relevant for our client's goals. We might integrate multiple treatment approaches together or provide two complimentary approaches at the same time to address multiple goals. These adjustments reduce how closely our practice matches the evidence base for a treatment, but hopefully they improve the outcomes. On the other hand, we often have to make these compromises that we're talking about and deviate from published protocols because of practical constraints in ways that could reduce effectiveness. Not being able to even approximate a published treatment's dosage because of insurance or clinician availability or transportation has the potential to reduce treatment effectiveness. I think these factors probably should play a role in whether or not we choose a particular treatment approach. Maybe we use the difference in the published dosage versus what face to face time we know we're going to have to make a determination about how much home practice we suggest the person do. Or maybe we say there's just too big of a difference in what I know I can do with this person, and I need to think about other treatment options.    I'd also like to add maybe an important caveat here, which is that I don't know of any aphasia treatment, and I would love for somebody to email me and tell me what study I haven't read yet, but I don't know of any literature that has established an optimal dosage for even an average person with aphasia, and certainly none that say if you see a person with aphasia with a certain profile you need to provide at least X minutes of this treatment for it to be effective. Most of our evidence base tells us about the average effect size across participants for a single dosage. And it's really hard to extrapolate this information to make decisions about an individual person with aphasia.   Janet: I think you're absolutely right, Rob. I have not read a paper about optimal dosage for any kind of a treatment either. And one of the things that I was thinking about as you were talking is that I want to assure clinicians that we're in a messy world here trying to figure out dosage and intensity. I want clinicians to be able to continue to walk through their clinical decision-making without trying to figure out how all these pieces fit together in treatment. The words that came to my mind, as you were talking about strategies that clinicians might use as they decide whether they want to use a particular treatment or not, is mindful clinical decision-making. If you choose a treatment knowing that you cannot deliver the number of sessions that are listed in the research literature, then what are you balancing or what are you giving up in order to implement that treatment? It's mindful decision-making, as you apply a treatment. Does that make any kind of sense to you in terms of looking at dosage?   Rob: Yep. I think that makes a lot of sense. It brings up this idea to me of opportunity cost, right? Imagine a decision tree of things or directions you could go as a clinician, and every branch of that tree that you could take means that you don't get to take the other branch. This could be a paralyzing decision-making process if you try to incorporate too much, but maybe dosage is one of those key elements that you say, “I'm going to prioritize, making sure dosage is at least approximate. Maybe I can't get 30 hours, but I can get close, so I feel confident that's not going to limit my treatment's effectiveness.”   Janet: I think it is important to pay attention to dosage. Don't just proceed with random assumptions about dosage but pay attention to it as you're deciding to implement a treatment.   We've talked a lot about the background and the importance of dosage and mindful clinical decision-making from a clinical perspective. I hope our readers know by this time that that the comments you're making are based in science, so I want to talk for a little bit about your paper in AJSLP, if we can. I mentioned already that the reference is listed below in Show Notes that accompany this podcast, and our listeners can also find it by searching the ASHA publications website, and also your University of Pittsburgh website, on the Communication Sciences and Disorders page and the Language and Cognition Lab page. You have two methods in this paper, analyzing hospital billing data, and also conducting a scoping review of the literature. Without delving too far into the details, will you tell us about these methods and how they allowed you to then examine the research-practice dosage gap?9   Rob:  Sure, I'm happy to summarize. I learned, you know, halfway through this project that I bit off quite a quite a bit of research. It was a pretty large project for me as a doctoral student! Our driving research purpose for this study was to estimate how well the typical dosage that was provided in clinical practice approximated what was provided in the research literature. There are two elements here, what's typical in clinical practice and what's typical in research. In particular, I was interested in outpatient clinical practice, because this is often the last stop in our rehabilitation medical model for people with aphasia, and it's where my clinical experiences had mostly been. To estimate dosage in clinical practice, we looked at billing data from a large regional provider in western Pennsylvania. Every time an SLP sees a client they have to bill a specific code to the insurance company for that visit. These codes are attached the electronic medical record and we were able to use resources in Pitt's Department of Bioinformatics to extract these billing codes. We counted them all up for people with a diagnosis of stroke and aphasia who were seen by a speech-language pathologist. We looked to see how many were there? How often do they occur? Over how many weeks did they occur? We don't, of course, know the extent to which these specific providers match the rest of the US or certainly not international clinics, but we felt like this was a good start, given the lack of information in the literature.    Then on the research side, we wanted to estimate the typical dosage for studies that had been published recently. If we looked back 30 years, we'd probably still be reading research articles, so we used a scoping review format because our research question was really focused broadly on dosage rather than the specific study designs, the quality of the studies, or the outcomes, we just wanted an estimate of the dose. I have to give a shout out here to Rose Turner, the librarian on our team at Pitt, who guided this aspect of the study, I strongly recommend anyone use a librarian for reviews like this, we could not have done it without her. We started with over 4500 study records which matched our search terms and we whittled them down to 300 articles.   Janet: That's a lot of work, Rob.    Rob: It was definitely a lot and I will say we have a team, right? This was not me, this was a team effort. We ended up with about 300 articles, which essentially describe the aphasia treatment literature over the past 10 years or so. These were not studies that were provided in the hospital, these are mostly community-based treatment studies. They didn't have any extras, like the people receiving treatment weren't also receiving a specific medication or some kind of brain stimulation, it was just behavioral treatment. We pulled the dosage out of these studies and then we compared them to what we found from our billing data.   Janet: I read the paper a few times, and I'm not unfamiliar with a scoping review or with gathering data from clinical records. I found myself as I was reading that paper thinking this must have taken you years and years and years, which of course, I know it didn't, but your team really has, I think, produced a great paper that is going to be a good foundation for us to think about dosage.   That's a wonderful summary of the methods you used and anybody who reads your paper will appreciate the summary that you just gave. What messages did you glean from the data that you collected? I am thinking of the specific research conclusions, and also messages that maybe might help us as clinicians?   Rob: Sure, so I don't think it's a surprise to any clinician out there that there was a meaningful gap in dosage between the research studies we looked at and the billing data. This was particularly true for the number of treatment hours. Research studies provided on average about 12 more hours of treatment than we found in the clinical billing data. That's per episode of care. Think about a person who comes into the clinic, has an evaluation, receives a number of treatment sessions, and is discharged. On average, that episode of care has about 12 hours less than your typical research study. This largely confirmed our hypothesis going in that we would see a gap here. Interestingly, clinical practice seemed to provide treatment over a longer period of time. The total number of weeks was longer than what was typically done in research studies. You might take a conclusion away that in at least outpatient clinical practice, treatment might be a little bit more distributed over time and less intensive than treatment provided in our research literature.    I think it's important to highlight that this is a really rough comparison of dosage, right? Billing data are not really specific to the clinician patient interaction. It's just the code that the clinician punches into their software when they're done. We've glanced over some important aspects here that we just weren't able to look at. For example, dose form, or how many times each element of a treatment was completed, is not something our study was able to look at. These are some of the most important aspects of treatment, and what I try to do as a clinician, such as goal setting, and counseling and education, the time working on our communication goals outside of impairment focused tasks. Those elements aren't often part of treatment studies, but they're absolutely part of clinical practice, and they take a lot of time. That's an unaccounted-for difference that could mean that we've underestimated this gap and dosage. On the other hand, clinicians often assign home practice; we work on something in the face-to-face session and then I say, great, you've done an amazing job, I want you to practice this 20 minutes a day until the next time you come in, something like that. We didn't have a way of tracking home practice in our study. Perhaps home practice is an effective way of making up this dosage gap. But we're not able to understand what role it might play based on these data.   Janet: I think you're right about that, and it makes a whole lot of sense. This is a start in our direction of trying to really understand more carefully what dosage means. Does it mean this large thing? Does it mean very specifically, how many times are we delivering the active ingredient in a specific therapy? There's so much more that we need to know, and I think you have figured out by now that I think dosage matters, I think it matters a lot. I think it matters a lot more than we've ever really paid attention to. I know also, and you've certainly described this, every day in clinical practice we make decisions about an individual's candidacy for rehabilitation, including that what we think as clinicians is the best match between a treatment, a patient's personal and aphasia characteristics that they bring to the rehabilitation enterprise, and the likelihood of an optimal outcome. If we get it wrong, because of a mismatch in dosage, we may not successfully translate research into practice, and we may not make that much of a difference in our patient's life, or at least we may not make as much difference as we hope to. In the case of a potential mismatch, how do you see that affecting our clients, their families, and our healthcare system, because we do have to think about all of these pieces of the aphasia rehabilitation enterprise.     Rob: I think you're right you know, this is just a start. When I started my doctoral program at Pitt Dr. Evans and I were working on grants, and we would always write a statement like, treatment services are limited, and then I'd go try to find the citation for that line, and it's hard to find. Dr. Simmons-Mackie's White Paper is fantastic and provides a little bit of evidence to that regard but there aren't a lot of numbers. So, I think you're right that this is not the end of the story, I'm hopeful this study is a start. I think if you buy into this idea that too much of a gap in dosage could result in voltage drop in our treatment effectiveness and poor outcomes, I'm concerned that our ability to help people with aphasia and their families recover and adjust and thrive with their new reality is diminished in real world clinical practice. That's a big concern for me, and that's the reason that I am a speech-language pathologist and working with people with aphasia. I think that's something we need to understand better as a field. I'm also aware that when somebody decides to come to treatment, they're dedicating time and energy to themselves and trusting us as clinicians that we know how to best use their time and energy. The time spent coming into the clinic or doing home practice could just as easily be spent with family or friends or in other fulfilling activities, so I want to be respectful of their time.    With regard to how this could affect our health care system, I don't know that I have a great answer for you. Sometimes I wonder whether the current medical model is really a good fit for chronic conditions like aphasia. The gap in dosage might just be one manifestation of the challenges that clients and families and clinicians face every day, in figuring out how to make affordable and effective and motivating treatment options available for people long term. That's got to be a priority for us moving forward, because I'm not sure that our current model really fills that need.   Janet: Rob, I agree with you on that, and I'm thrilled that you and your colleagues are making this initial attempt to try to figure out how we can best match the treatment and the clients in terms of dosage, to achieve the optimal outcome that we possibly can.   You know, Rob, that I think that this conversation is fascinating, and we could talk all day. My belief is you and your team have just scratched the surface about treatment delivery information that we must be mindful of, in both our research and our clinical practice. A lot today that we've talked about really relates to clinical practice, but I imagine there are just as many thoughts or concerns or cares that we need to take when engaging in a research protocol to evaluate the success of a treatment.    Rob, as we draw this interview to a close, what pearls of wisdom or lessons learned do you have for our listeners, both researchers and clinicians, about dosage and aphasia rehabilitation, bridging the research-practice dosage gap, and reducing the voltage drop as we implement aphasia treatment.   Rob: Yeah, it's a tall order.   I don't think there's a quick fix, certainly, but I I'm going to summarize and expand on some of our recommendations from the paper. One thing that's important, I think, as we move forward is that, as researchers, we need to be really thoughtful about our selection of dose. As you mentioned, with regard to the stage of research, maybe our selection of dosage in early-stage research reflects our underlying research questions and issues of statistical power and funding constraints. For later stage research that's starting to think about clinical outcomes, we need to provide a clear justification for deviating from a dosage that's not attainable in clinical settings. In the same vein, I think as researchers we can do more to provide easily accessible and hopefully free materials to clinicians to facilitate home practice and to augment the limited face-to-face time that clinicians might have with their clients. Software and app development are getting there, and I think they're improving how easy it is to do home practice. To me a treatment study that you want to be out in the real world is only going to be successfully done if you really give clinicians easy access to tools where they can implement it. I know, just like many clinicians know, their time is really limited particularly between seeing patients, and so I don't want to make them do a whole lot of work to implement my intervention.    The second recommendation from our paper is that we need more research on the role of dose. We've talked about one challenge in this line of work, which is that dosage requirements are probably a function of an individual's language profile, almost certainly a function of their individual language profile, and their individual circumstances. If you compare one dose to another in some group trial, it only gives you so much information about what dose is best for a given individual. I think this is a problem our field is going to have to solve. Our lab is working on one solution that we're really excited about, which is to base treatment dosage not on the number of minutes, or how often you see someone, but on their real time performance on individual treatment items, like their ability to produce a specific sentence in script training or name a word, if you give them a picture. Our lab is not really thinking about dosage in terms of treatment time, right now we're thinking about dosage at the item level individually for each person. We're finding some strong preliminary evidence that complex algorithms can tailor item level dosage to real time performance and can make treatment potentially more effective and more efficient in terms of how much we can do in a period of time. But we have a lot more work to do, establishing this in a larger sample size and making sure that it translates well to clinical practice.    This brings me to the last recommendation, which is we need more research that looks at how can we implement our research in clinical practice. I believe there was a paper that came out in AJSLP recently (Roberts et al., 2021) which found that 1% of studies published in the Asha journals were implementation focused. I think that number is too low. We need more implementation-focused research that has contributions from all stakeholders, people with aphasia and their families and clinicians and researchers. It's going to take a team working together to ensure that we can translate our evidence base to clinical practice without voltage drop. I think that's where I would love to see our field headed.    Janet: Rob, I love the recommendations from your paper and the way that you just described them. It's exciting to be in this time in our field, where people like yourself and your team are thinking about the idea that we've got some great therapies, now how do we deliver them in ways that are sensitive to the needs of the clinician and the needs of the client and delivered in a mindful way of clinical decision-making.    Thank you for all of those recommendations and for your work. You're going to do more, right?   Rob: Thank you for having me. Yes, there will be more.   Janet: This is Janet Patterson, and I'm speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest, Rob Cavanaugh, for sharing his knowledge and experiences with us as he and his colleagues investigate treatment parameters, including dosage, in aphasia rehabilitation. We look forward to seeing many additional articles on this topic from Rob and his colleagues.    On behalf of Aphasia Access, we thank you for listening to this episode of The Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org. Thank you again for your ongoing support of Aphasia Access.       References and links from this episode:   University of Pittsburgh Department of Communication Sciences and Disorders Language Rehabilitation and Cognition Lab https://lrcl.pitt.edu  @pittlrcl    University of Pittsburgh  Department of Communication Sciences and Disorders @PittCSD      Cavanaugh, R., Kravetz, C., Jarold, L., Quique, Y., Turner, R., & Evans, W. S. (2021). Is There a Research–Practice Dosage Gap in Aphasia Rehabilitation? American Journal of Speech-Language Pathology. https://doi.org/10.1044/2021_AJSLP-20-00257   Roberts, M. Y., Sone, B. J., Zanzinger, K. E., Bloem, M. E., Kulba, K., Schaff, A., Davis, K. C., Reisfeld, N., & Goldstein, H. (2020). Trends in clinical practice research in ASHA journals: 2008–2018. American Journal of Speech-Language Pathology, 29(3), 1629–1639. https://doi.org/10.1044/2020_AJSLP-19-00011

FEATURED RESEARCHERS & PARTNERSTara Mehta, PhDAssociate Professor of Clinical PsychologyDepartment of Psychiatry, UIC College of MedicineConsultant, CCTS Community Engagement & Collaboration CoreUrban Initiatives650 W. Lake St., Suite #340Chicago, IL 60661info@urbaninitiatives.orgLearn more about the CCTS Pilot Grant program at ccts.uic.edu/funding If you would like to see your interdisciplinary team featured on the podcast, reach out to me at laurenw@uic.edu. Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch. The University of Illinois at Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Featured researchers:Hana Hinkle, PhD, MPHInterim Director and Department Head, National Center for Rural Health ProfessionsAssociate Director, Illinois Area Health Education Center Network Program ResearchAssistant Professor, Department of Family and Community Medicine, University of Illinois College of Medicine RockfordMichael Glasser, PhD (retired)Former Director, National Center for Rural Health ProfessionsAssociate Dean, Rural Health Professions ProgramResearch Professor, Medical Sociology and Dr. George T. & Mildred A. Mitchell Endowed ProfessorUniversity of Illinois College of Medicine RockfordLearn about rural health training opportunities through the National Center for Rural Health Professions and Illinois AHEC.To learn more about translational research, visit ccts.uic.edu.Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch.The University of Illinois at Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

While there is a steady stream of new gene therapies expected to be approved in the next decade, there are hundreds of diseases that could benefit from gene therapies but are not pursued by drug developers because they affect too small a population to be considered commercially viable. In an effort to change the economics of gene therapy for ultra-rare diseases, the Foundation for the National Institutes of Health is establishing the Bespoke Gene Therapy Consortium under its Accelerating Medicines Partnership program. The proposed five-year, $102.5 million program involves the National Institutes of Health's National Center for Advancing Translational Sciences, the U.S. Food and Drug Administration's Center for Biologics Evaluation and Research, and a group of commercial gene therapy developers. We spoke to P.J. Brooks, deputy director of the Office for Rare Diseases Research at NCATS and one of the architects of the program, about the need it is trying to address, why it is looking beyond translational science to issues including manufacturing and regulation, and how it hopes to accelerate the development of gene therapies for rare diseases. This episode is part of our ongoing Platforms of Hope series that explores advances in gene therapy and gene editing.

Featured researchers:Mary A. Khetani, PhDAssociate Professor, Occupational TherapyUniversity of Illinois Chicago, College of Applied Health SciencesVera KaelinResearch Assistant, PhD CandidateUniversity of Illinois Chicago, College of Applied Health Sciences Organizations & Initiatives:UIC Children's Participation in Research Lab, Follow us on TwitterRocky Mountain Human ServicesEarly Intervention & Contacts by State To learn more about translational research, visit ccts.uic.edu.Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch.The University of Illinois at Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.  

Featured researchers:Laura Sanchez, PhDAssociate Professor, Department of Biochemistry & ChemistryUniversity of California Santa CruzJoanna Burdette, PhDProfessor, Department of Pharmaceutical SciencesAssociate Dean for ResearchUniversity of Illinois at Chicago College of PharmacyLearn about funding and career development opportunities with the CCTS Pilot Grant Program and UIC BIRCWH Program .Interested in supporting cancer research at UIC? Visit the UI Cancer Center website . To learn more about translational research, visit ccts.uic.edu.Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch.The University of Illinois at Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Progeria is a rare disease that causes premature aging in childhood; the FODMAP diet is explained as a treatment for IBS; J&J vaccine restarted; Question of the month: Fever and Cough.Introduction: Low FODMAP Diet and J&J COVID Vaccine is back.  By P. Eresha Perera, MS3, and Sherika Adams, MS3.Today is May 10, 2021.Irritable Bowel Syndrome. Patients with IBS frequently have other conditions such as anxiety, depression, somatization, fibromyalgia, chronic fatigue syndrome, GERD, dyspepsia, non-cardiac chest pain, chronic pain, and other mental illness. A common triad we see in the clinic is: Anxiety + Fibromyalgia + IBS. Treating these conditions is hard, and even more so when they are combined. Let’s focus for now on IBS treatment. Recently we had a patient with IBS who had a laparoscopic cholecystectomy and of course was complaining of abdominal pain and constipation. We mentioned the low FODMAP diet as part of the treatment. The low FODMAP diet has been proven for the treatment of irritable bowel syndrome (IBS) and or small intestinal bacterial overgrowth (SIBO). It has decreased symptoms in 86% of people. FODMAP is an acronym that stands for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols. This diet attempts to restrict these short-chain carbs that are poorly absorbed by the small intestine, resulting in cramping, constipation, diarrhea, bloating, and gas or flatulence.You can recommend your patients to follow 3 steps: Step 1: Eliminate foods that are high on FODMAP, Step 2. Determine which foods cause symptoms by reintroducing eliminated foods slowly, and Step 3. After identification of the FODMAP foods that cause symptoms, remove them completely from the patient’s diet. Dr. Hazel Galon Veloso, John Hopkins's gastroenterologist, recommends doing step 1 for 2-6 weeks and step 2 reintroducing a high FODMAP food back into diet every 3 days. Example of HIGH FODMAP foods: Dairy-based milk, yogurt, ice cream, wheat products (cereal, bread, and crackers), beans, lentils, vegetables like artichokes, asparagus, onions, and garlic, and fruits such as apples, cherries, pears, and peaches. Example of LOW FODMAP foods: Eggs, meat, cheese such as Brie, cheddar, and feta; almond milk, rice, quinoa, oats, potatoes, tomatoes, cucumbers, zucchini, grapes, oranges, and strawberries.If available, Fodmap should be initiated with the advice of a nutritionist that can help with the transition, prevent over-restriction and nutritional replete diet. Consider this diet as an initial treatment for your patients with IBS.Vaccination with J&J COVID 19 Vaccination has been restarted.On a different note, On April 23, 2021, the CDC’s Advisory Committee on Immunization Practices (ACIP) has recommended to restart vaccination with the Janssen/Jonson & Jonson COVID-19 vaccine after a pause on April 13, 2021[2]. After giving the J&J vaccine to almost 8 million patients, 15 cases of Thrombosis with Thrombocytopenia Syndrome (TTS) were reported and three of them died. The recommendation was given after a risk-benefit analysis that determined that the benefits of the vaccine outweigh the risks. The risk of TTS in women age 18-49 still exists, but it is considered very low when compared to all the risks carried by COVID 19 itself. Under the emergency use authorization, the Jonson & Jonson vaccine is considered highly effective and safe. In comparison, the AstraZeneca vaccine has had several more cases of TTS, Moderna has had only 3 but with normal platelets, and Pfizer has had zero cases of TTS[3].  This is Rio Bravo qWeek, your weekly dose of knowledge brought to you by the Rio Bravo Family Medicine Residency Program from Bakersfield, California. Our program is affiliated with UCLA, and it’s sponsored by Clinica Sierra Vista, Let Us Be Your Healthcare Home.___________________________Question of the Month: Fever and CoughWritten by Hector Arreaza, MDWhat are your top 3 differential diagnosis and acute management for a 69-year-old man with new onset of fever, cough, leukocytosis and a right lower lobe consolidation? Important: Rapid COVID-19 test is negative.____________________________Progeria. With Salwa Sadiq-Ali, MS3, Veronica Phung, MS3; and Hector Arreaza, MD.   “The Curious Case of Benjamin Button” is an American movie released in 2008, directed by David Fincher, starring Brad Pitt. Let’s see how we can connect this movie to today’s topic.What is Hutchinson Gilford Syndrome better known as Progeria?V. Phung: That’s a great question! Progeria is an extremely rare disease. It’s progressive and causes children to age very quickly within the first few years of their life. The disease is not evident at birth. S. Sadiq-Ali: Exactly! Usually, kids will start developing symptoms within their first year of life with the first symptom being failure to thrive. Other common features include a disproportionately large head for their face, narrow nasal ridge and tip, small mouth, retro and micrognathia, little to no subQ fat with small outpouchings, delayed eruption of primary teeth, progressive joint contractures, and essentially all geriatric conditions like alopecia, osteoarthritis, and hearing loss. One interesting tidbit though is that their motor and mental development is normal! H. Arreaza: A child getting old quickly, that’s so interesting. What’s the pathophysiology of this condition?V. Phung: So, it’s due to a genetic mutation - a single nucleotide polymorphism - in the LMNA gene known as lamin A. This gene codes for the lamin A protein which holds the cell’s nucleus together. A mutation causes your body to make a much smaller protein called progerin. Progerin is not stable so it doesn’t hold the cell’s nucleus together properly. This instability is thought to be the cause of premature aging. S. Sadiq-Ali: That’s right Veronica! There are two common mutations – the classic form and the non-classic form. The difference between the two forms is where in the gene the mutation occurs. H. Arreaza: So, if I suspect my patient has progeria, I should do a genetic test for the LMNA gene mutation. How common is progeria?S. Sadiq-Ali: About 1 in every 4 to 8 million births is affected by progeria. Unlike many other conditions, there aren’t any predisposing factors - such as gender, location, or ethnicity. It’s completely random! Right now, about 179 children across 53 different countries have been diagnosed with progeria. 18 of those cases are here in the US. One family in India, has had 5 children with progeria. Another interesting fact is that there have been only 2 known cases of a completely healthy person carrying the mutated gene!  V. Phung: Since they’re aging so rapidly and prematurely, their life expectancy is about 14.5 years. However, the oldest believed survivor - Tiffany from Ohio – has lived up to the age of 43! H. Arreaza: And she is still alive, as far as I know. What can be done in terms of management to ensure these children and adults can live their best, most comfortable life? S. Sadiq-Ali: There’s no cure so you’d want to manage any symptoms and make sure the child is getting proper nutrition. Generally, the recommendation is to have small frequent meals, maintain good hydration, do routine PT and exercises, use shoe pads since they don’t have much body fat to provide cushioning, use plenty of sunscreen, prescribe anticoagulation as needed for geriatric conditions like CAD/CVD, and manage any fractures or dislocations that may occur. It requires a multidisciplinary care team.H. Arreaza: So, you mentioned Tiffany Wedekind, the person with progeria who has lived the longest. Now, I want to mention Sam Berns, maybe the most famous person with progeria. “Life According to Sam” is an HBO documentary directed by Sean Fine and Andrea Nix Fine. It was presented in January 2013 at the Sundance Film Festival (I love Park City, Utah). The documentary explains the impact of progeria on the lives of Sam Berns and his parents, Dr. Leslie Gordon and Dr. Scott Berns. You can also see or listen to the Ted Talk given by Sam Berns (google it or go to the link in our script).S. Sadiq-Ali: These kids are aging so quickly they have geriatric conditions; do they die from natural causes or from heart disease and stroke? V. Phung: That’s a great question. Unfortunately, yes. Death is commonly due to complications from atherosclerosis, cardiac disease, and cerebrovascular disease - like a heart attack or stroke. S. Sadiq-Ali: “The Curious Case of Benjamin Button” is usually thought to be an example of progeria, but it’s actually the opposite: A child born as an adult who dies as a baby.H. Arreaza: That was really educational. Progeria, a rare disease that you should know about, in case someone asks you. Remember, “family doctors know everything”.  Even without trying every night you go to bed being a little wiser.ConclusionBy Hector Arreaza, MDNow we conclude our episode number 51 “Progeria”, a rare disease that requires care by a multidisciplinary team. You may not encounter a patient with progeria in your life, but if you do, now you know the fundamentals of that syndrome. We started this episode talking about the FODMAP diet. Consider this diet as part of the initial treatment of IBS. Don’t forget to send your answer (one more week to do it). What are your top 3 differential diagnosis and the acute management of a 69-year-old male with new onset of fever, cough, leukocytosis, right lower lobe consolidation and negative rapid COVID 19 test. Remember, even without trying, every night you go to bed being a little wiser.Thanks for listening to Rio Bravo qWeek. If you have any feedback about this podcast, contact us by email RBresidency@clinicasierravista.org, or visit our website riobravofmrp.org/qweek. This podcast was created with educational purposes only. Visit your primary care physician for additional medical advice. This week we thank Hector Arreaza, Sherika Adams, Eresha Perera, Salwa Sadiq-Ali, and Veronica Phung. Audio edition: Suraj Amrutia. See you next week!_____________________References:Veloso, H. G. (n.d.). FODMAP Diet: What You Need to Know. Johns Hopkins Medicine. https://www.hopkinsmedicine.org/health/wellness-and-prevention/fodmap-diet-what-you-need-to-know.  ACIP Updates Recommendations on Johnson & Johnson Vaccine, American Association of Family Physicians, aafp.org. https://www.aafp.org//news/health-of-the-public/20210429acipjjvac.html Meara, Killian, CDC’s ACIP Votes to Reaffirm Recommendation of Johnson & Johnson COVID-19 Vaccine, April 23, 2021, ContagionLive.com. https://www.contagionlive.com/view/cdc-s-acip-votes-to-reaffirm-recommendation-of-johnson-johnson-covid-19-vaccine Progeria, National Center for Advancing Translational Sciences, National Institutes of Health, https://rarediseases.info.nih.gov/diseases/7467/progeria, accessed on May 6, 2021. Sinha JK, Ghosh S, Raghunath M. Progeria: a rare genetic premature ageing disorder. Indian J Med Res. 2014;139(5):667-674. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4140030/ Gordon LB, Brown WT, Collins FS. Hutchinson-Gilford Progeria Syndrome. 2003 Dec 12 [Updated 2019 Jan 17]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2021. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1121/.  The Progeria Research Foundation, https://www.progeriaresearch.org/, accessed on May 6, 2021. Family battles with rare progeria disease, Deccan Herald, New Delhi, November 9, 2009, https://www.deccanherald.com/content/34971/family-battles-rare-progeria-disease.html Sam Berns, TEDx MidAtlantic 2013, My philosophy for a happy life. Available at: https://www.ted.com/talks/sam_berns_my_philosophy_for_a_happy_life?language=en, accessed on May 6, 2021.

Featured researcher:Olusola Ajilore, MD, PhDAssociate Professor, Department of PsychiatryUniversity of Illinois at Chicago College of MedicineOther research team members mentioned:Alex Loew, MD, PhDAssociate Professor, Departments of Psychiatry and BioengineeringUniversity of Illinois Chicago College of MedicineJun Ma , MD, PhDProfessor of Academic Internal Medicine and Geriatrics, Department of MedicineUniversity of Illinois at Chicago College of MedicineTo learn more about translational research, visit ccts.uic.edu.Interested in volunteering to participate in health research? Today's researchers want to make sure that treatments and cures are designed for everyone's unique needs. Are you ready to make a difference? Learn more at go.uic.edu/healthresearch.The University of Illinois at Chicago Center for Clinical and Translational Science is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

In this sixth episode, experts discuss how vaccine development complexities often boil down to the manufacturing process and scaling up to large quantities. We take a look at how manufacturing processes are set up including the use of contract manufacturers (CMOs or CDMOs) that are largely in control of different parts of the production line. Experts also discuss the various pros and cons for the different manufacturing processes of mRNA vaccines, adenoviral vector vaccines, protein subunit vaccines and inactivated vaccines, and where bottle necks and supply delays could potentially form if stakeholders are not on their game. Ancillary material like vials and syringes will also be an important consideration when supply and demand is still unclear given that a lot of promising vaccines are not yet authorized. At the end of the day, nothing is impossible in this world filled with experienced industry players, but cooperation and collaboration might be the ultimate secret ingredient to success. Expert Guests: -- Dr Michael Kurilla is the Director of the Division of Clinical Innovation at the National Center for Advancing Translational Sciences, US National Institute of Health. He has been a member of the advisory committee for vaccines and related biologics since 2018. -- Dr Craig Laferriere is a consultant on vaccine design and manufacturing with over 25 years experience in vaccine manufacturing, design and licensing. He is the head of vaccine development at Novateur and has previously worked on vaccine development for GlaxoSmithKline and Pfizer. -- Dr Prashant Yadav is a Senior Fellow at the Center for Global Development and Affiliate Professor of Technology and Operations Management at INSEAD. Yadav has with governments and global organizations to improve medical product supply chains. Previous roles include Strategy Leader-Supply Chain at the Bill & Melinda Gates Foundation and Chair of the Market Dynamics Advisory Group of the Global Fund. associate editor of PharmSource, a trade publication that exclusively covers the pharmaceutical manufacturing industry.

In this introductory episode, Surani speaks to Kent Collier, the independent sponsor of the podcast, about what this series hopes to achieve. This episode sets us up with some foundations on vaccine development, and where we are right now with the current vaccine approaches for Covid-19. We'll also get an understanding from experts on where Covid-19 sits in comparison to SARS in 2003 and the seasonal flu. Experts finally discuss their initial outlook for the future. Expert Guests: -- Dr Michael Kurilla is the Director of the Division of Clinical Innovation at the National Center for Advancing Translational Sciences, US National Institute of Health. He has been a member of the advisory committee for vaccines and related biologics since 2018. -- Dr Nikolai Petrovsky is a Professor of Medicine, Flinders University in Australia and vice-president and secretary general of the International Immunomics Society. He is the founder of vaccine biotech Vaccine, which has a protein based candidate in early development for Covid-19. -- Dr Gregory Gray is a Professor at Duke University and infectious disease epidemiologist with three affiliations: Duke Global Health Institute, Division of Infectious Diseases, and Duke Nicholas School of Environment. He was on the FDA advisory committee for vaccines and related biologics between 2010-2013.

In this second episode, experts talk about what goes into designing a clinical trial, how they are set up to give answers and where they can be flawed. We'll look at a few key questions about the ongoing Covid-19 vaccine trials including the vaccines being set up to show protection against mild disease versus severe disease and how releasing results early may raise some concerns in how we can interpret the results. Experts also discuss the regulators that approve the vaccines and their tough position to release a new vaccine to the public on limited data and very tight review timelines amid the pressure of a pandemic. Expert Guests: -- Dr Deborah Fuller is a Professor of Microbiology at The University of Washington School of Medicine. A veteran vaccinologist and researcher, she has been working on vaccine development for the last 30 years with specific research around DNA and RNA technologies. -- Dr Michael Kurilla is the Director of the Division of Clinical Innovation at the National Center for Advancing Translational Sciences, US National Institute of Health. He has been a member of the advisory committee for vaccines and related biologics since 2018. -- Dr Scott Evans is a Professor and Founding Chair of The Department of Biostatistics and Bioinformatics at George Washington University. He is a former member of an FDA advisory committee and a member of the steering committee of the clinical trials transformation initiative. -- Dr Nikolai Petrovsky is a Professor of Medicine, Flinders University in Australia and vice-president and secretary general of the International Immunomics Society. He is the founder of vaccine biotech Vaccine, which has a protein based candidate in early development for Covid-19. -- Dr Gregory Gray is a Professor at Duke University and infectious disease epidemiologist with three affiliations: Duke Global Health Institute, Division of Infectious Diseases, and Duke Nicholas School of Environment. He was on the FDA advisory committee for vaccines and related biologics between 2010-2013.

In this third episode, experts discuss the two big mRNA vaccine breakthroughs from Pfizer/BionTech and Moderna, which now have emergency use authorisations in a number of countries. We hear their first impressions on what the “better than expected” results tell us and how that might translate to durability, protection against severe disease and transmission. They also explore the inevitable challenges around gathering future evidence if people in the placebo group are offered the vaccines. The initial safety profile of these mRNA vaccines gets dissected including the reported allergic reactions and cases of Bell's Palsy. Amid current limitations with these datasets, experts also discuss viewpoints on administering the vaccine to pregnant women, women who want to get pregnant and 16/17 year olds. Expert Guests: -- Dr Deborah Fuller is a Professor of Microbiology at The University of Washington School of Medicine. A veteran vaccinologist and researcher, she has been working on vaccine development for the last 30 years with specific research around DNA and RNA technologies. -- Dr Nikolai Petrovsky is a Professor of Medicine, Flinders University in Australia and vice-president and secretary general of the International Immunomics Society. He is the founder of vaccine biotech Vaccine, which has a protein based candidate in early development for Covid-19. -- Dr Yves Van Laethem is a retired virologist from Centre Hospitalier Universitaire Saint-Pierre and is currently the spokesperson for the fight against coronavirus in Belgium. -- Dr Scott Evans is a Professor and Founding Chair of The Department of Biostatistics and Bioinformatics at George Washington University. He is a former member of an FDA advisory committee and a member of the steering committee of the clinical trials transformation initiative. -- Dr Michael Kurilla is the Director of the Division of Clinical Innovation at the National Center for Advancing Translational Sciences, US National Institute of Health. He has been a member of the advisory committee for vaccines and related biologics since 2018.

The economics of developing gene therapies can make it unattractive for biopharmaceutical companies to invest in bringing a gene therapy through development and to the market for ultra-rare conditions. But researchers at the National Center for Advancing Translational Sciences are working to develop a set of gene therapy vectors that can be used in multiple indications and eliminate the time and cost of preclinical development for a range of conditions through its Platform Vector Gene Therapy, or PaVe-GT program. In this fourth and final part of our gene therapy series, we spoke to P.J. Brooks, program director in the Office of Rare Diseases Research at the National Center for Advancing Translational Sciences, about the PaVe-GT program, the potential for developing a toolkit of plug-and-play vectors, and how this can alter the cost of developing gene therapies for ultra-rare and individual patients. This series is made possible through support from BioMarin, Pfizer, Retrophin, Novartis Gene Therapies (formerly AveXis), UCB Inc., Genentech, Ultragenyx, Novartis, RegenxBIO, and Sangamo Therapeutics.

A few days ago we brought you an interview with a Naval Research Lab scientist who used nano-structures to help discover how the coronavirus binds to and infect human cells. Now, for the other half of the story, the scientist at the National Center for Advancing Translational Sciences. NCATS took the Navy-developed structures and did the tests on cells. Joining the Federal Drive with those details, Dr. Kirill Gorshkov.

When talking about the pandemic, host cell surface angiotensin converting enzyme might not be a household phrase. But it's part of an important piece of research completed by the Naval Research Laboratory and the National Center for Advancing Translational Sciences, part of the NIH. The research, just accepted by a peer review scientific journal, has to do with how the virus actually goes about infecting people. For more, the Federal Drive spoke with research chemist, and acting head of the optical nanomaterials section at the Naval Research Lab, Dr. Mason Wolak. We started with the nature of the collaboration.

Chris Austin, director of the National Institutes of Health's National Center for Advancing Translational Sciences, on the power of collaboration for translating basic science into the cures and therapies that benefit society.

Did you know that NCATS issued over 45 patents in eighteen months? Listen as Lisa and guest, Lili Portilla, discuss the different parts of NIH, what NCATS is and what it does, and their work with small businesses and much more on this episode of Tech Transfer IP. Lili is the Director of Strategic Alliances of the National Center for Advancing Translational Sciences, also known as NCATS at the National Institutes of Health. Lili has worked in the areas of strategic alliances, technology transfer at NIH since 1999, joining NCATS in December 2011. Before coming to NCATS, Lili served as Senior Advisor to the Director of National Center for Research Resources and as the Director of the Office of Technology Transfer and Development at the National Heart, Lung, and Blood Institute. Lili discusses the functions her office performs, how NCATS is structured, and the most prominent programs that NIH is focused on. She speaks about NIH's data enclave and how it can help physicians with COVID-19 procedures, their work with rare diseases, and the data directory they have to connect people that have been diagnosed with others like themselves. Listen as Lili shares the BrIDGS Program and what it does, and other services her office provides. Lili discusses how the SBIR and STTR are structured and the clinical research management tools that NCATS funds. Listen as Lili speaks about the challenges her office faces, and how much she loves her job, especially now during the pandemic. In This Episode: [02:31] Welcome to the show, Lili! [02:51] Lili shares her journey to tech transfer and what led her to NIH. [04:50] Lili speaks about how much she loves working at NIH and the different parts. [05:55] Lili discusses what the NCATS center is and what it does. [07:33] Lili speaks about the functions that her office performs and their work with small businesses. [08:46] Listen as Lili shares how NCATS is structured. [12:23] Lili discusses some of their most prominent programs that NIH focuses on. [16:22] NIH's data enclave is a resource that allows physicians to see how to treat COVID-19. [17:09] Lili shares their focus on rare diseases; they have a directory for people to connect with people who have been diagnosed with rare diseases. [20:05] Lili speaks about some internal programs they have now. [22:19] She talks about the BrIDGS program that helped launch 13 INDs. [26:06] Lili shares some additional services her office provides. [28:16] They had 45 patents issued over 18 months. [29:54] Lili speaks about some interesting information about their patent portfolio. [31:45] With COVID, they have done some agreements that were finalized in two days. [33:55] Lisa points out that if they didn't have good relationships with people, they wouldn't have repeat customers. [35:18] Lili speaks about how SBIR and STTR are structured. [38:41] Lisa speaks about the difficulty of finding an animal model. [40:23] NCATS also funds clinical research management tools. [42:38] Lili shares how NCATS engages with women entrepreneurs in the program. [44:19] Lili discusses how NCATS will take part in the Applicant Assistance Program. [46:11] Lili says that being an SBIR or STTR grantee comes with resources that they can apply to. [48:26] Lili shares some of her office's biggest challenges. [51:26] How challenging is it to have to pivot anytime day today? [52:29] Lili speaks about how much her job means to her, especially now with the pandemic. [54:35] Lisa talks about how important the organizations are when there are situations like we are facing now. [56:07] If you had three wishes, what would those wishes be for your office? [58:27] Lili, thank you so much for being on the show! Find Lili: NIH NCATS  

Chris Austin calls himself an evangelist for collaboration when it comes to rare disease drug development. The director of the National Institutes of Health’s National Center for Advancing Translational Sciences said it is essential for rare disease advocates to look beyond their own diseases to recognize commonalities between their conditions and others to find opportunities to collaborate. We spoke to Austin ahead of his keynote address at this year’s Global Genes Rare Drug Development Symposium June 11, about why collaboration is critical to accelerating research, how broadly organizations should think about collaborations, and how patient groups can best work with NCATS to leverage the resources it has.

Welcome to "Wellness in Color," a podcast series that explores perspectives on mental health to reshape the cultural language of mental illness. Interview Guest: Houa Moua Hosted by: Vang Xor Xiong (Xorr) Produced by: NAMI Minnesota (namimn.org) Guest Bio: For Houa Moua, healthy means being happy. From a moderately traditional Hmong household, Houa’s parents and elders believed that most anything could be fixed through shamanic intervention. However, if there are signs of mental illness, it was the doing of your soul or spirits trying to communicate. This is the reason that she believes, Hmong folks don't seek medical treatment for mental health, especially for depression and PTSD (post traumatic stress disorder) and then healing rarely happens. Yet in spite of this, her wellness goals are to have healthy, communicative, and inclusive relationships with family, friends, coworkers, and community. This episode was recorded on 05/20/2019 at NAMI Minnesota in St. Paul, MN. For more information and resources on mental illness, education and legislative advocacy please visit the NAMI Minnesota website at namimn.org Efforts related to "Wellness In Color" podcast episodes were supported by the National Center for Advancing Translational Sciences of the National Institutes of Health Award Number UL1TR002494. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Welcome to "Wellness in Color," a podcast series that explores perspectives on mental health to reshape the cultural language of mental illness. Interview Guest: Seyeon Bae Hosted by: Caroline Ludy Produced by: NAMI Minnesota (namimn.org) Guest Bio:  Raised in South Korea, current Minnesotan Seyeon Bae says her relationship with mental health is both love and hate. Fears that others would think she was “crazy” or “ill” were always initially present, yet she was never afraid to seek help and sought therapy with the support of her family. Ultimately, change is incremental, and her views towards mental health have been shaped by her time spent in the U.S. Her plans are to shift opinions on mental health not only within herself, but also within her culture, which drives her to constantly reflect on her own journey to knowing but flipping the status quo in order to destigmatize mental health issues. This episode was recorded on 05/06/2019 at NAMI Minnesota in St. Paul, MN. For more information and resources on mental illness, education and legislative advocacy please visit the NAMI Minnesota website at namimn.org Efforts related to "Wellness In Color" podcast episodes were supported by the National Center for Advancing Translational Sciences of the National Institutes of Health Award Number UL1TR002494. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Welcome to "Wellness in Color," a podcast series that explores perspectives on mental health to reshape the cultural language of mental illness. Interview Guest: Jasmine Q’ian Hosted by: Caroline Ludy Produced by: NAMI Minnesota (namimn.org) Guest Bio:  Living with borderline personality disorder (BPD) and post-traumatic stress disorder (PTSD), 21 year-old Jasmine Q’ian battles two worlds, the rigors of student life attending college in Minnesota while also navigating her cultural background where talk of mental illness remains heavily stigmatized. Today she talks to “Wellness In Color” about the barriers she has faced both personally and culturally growing up first generation Chinese American. Working hard to knock down personal and cultural barriers, she shares how years of mental health treatment and support have given her a brighter outlook on the future of her wellness journey. This episode was recorded on 05/02/2019 at NAMI Minnesota in St. Paul, MN. For more information and resources on mental illness, education and legislative advocacy please visit the NAMI Minnesota website at namimn.org Efforts related to "Wellness In Color" podcast episodes were supported by the National Center for Advancing Translational Sciences of the National Institutes of Health Award Number UL1TR002494. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Welcome to "Wellness in Color," a podcast series that explores perspectives on mental health to reshape the cultural language of mental illness. Interview Guest: Lauryn Daniel Hosted by: Caroline Ludy Produced by: NAMI Minnesota (namimn.org) Guest Bio:   A native of Chicago’s South Side, Lauryn Daniel describes herself as multifaceted. Living with anxiety and depression, she talks to Wellness In Color about her experiences working in the mental health field as an Adult Rehabilitative Mental Health Service (ARMHS) worker with plans to continue her career as a psychiatric nurse practitioner. Eventually she wants to reconnect with her roots in Chicago with plans to open her own clinic. She learns as much from her clients as she does from herself and wants people to know that empathy starts from within. Her mantra is “Be empathetic with yourself. Never stop watering your roots.” ARMHS info: https://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&RevisionSelectionMethod=LatestReleased&dDocName=ID_058153 This episode was recorded on 05/01/2019 at NAMI Minnesota in St. Paul, MN. For more information and resources on mental illness, education and legislative advocacy please visit the NAMI Minnesota website at namimn.org Efforts related to "Wellness In Color" podcast episodes were supported by the National Center for Advancing Translational Sciences of the National Institutes of Health Award Number UL1TR002494. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Welcome to "Wellness in Color," a podcast series that explores perspectives on mental health to reshape the cultural language of mental illness. Interview Guest: Bree Zimmerman Hosted by: Maritza Steele Produced by: NAMI Minnesota (namimn.org) Guest Bio:  Bree Zimmerman is a 29 year old black, queer, physically disabled woman living in the Twin Cities area. Also an introverted “cat mom”, Bree is a passionate advocate who works to help create greater accessible spaces for disabled people including amplifying the voices surrounding disability justice. In her current venture she is excited to observe and take part in the growing number of conversations about healing practices while exploring different modalities- specifically ones prioritizing the importance of what holistic collective care and healing can look like for black and brown folks, both as a community and as individuals. Bree' Recommended Websites on Disability Justice: Instagram: Access Centered Movement https://www.instagram.com/accesscenteredmovement/ Leaving Evidence "Changing the Framework: Disability Justice / How our communities can move beyond access to wholeness" https://www.google.com/amp/s/leavingevidence.wordpress.com/2011/02/12/changing-the-framework-disability-justice/amp/ “Disability Justice” is Simply Another Term for Love https://www.google.com/amp/s/leavingevidence.wordpress.com/2018/11/03/disability-justice-is-simply-another-term-for-love/amp/ Bree's book recommendation: "Brilliant Imperfection: Grappling with Cure" by Eli Clare This episode was recorded on 04/26/2019 at NAMI Minnesota in St. Paul, MN. For more information and resources on mental illness, education and legislative advocacy please visit the NAMI Minnesota website at namimn.org Efforts related to "Wellness In Color" podcast episodes were supported by the National Center for Advancing Translational Sciences of the National Institutes of Health Award Number UL1TR002494. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Welcome to "Wellness in Color," a podcast series that explores perspectives on mental health to reshape the cultural language of mental illness. Interview Guest: Vang Xor Xiong (Xorr) Hosted by: Caroline Ludy Produced by: NAMI Minnesota (namimn.org) GUEST BIO:  Being a 1.5 generation immigrant and mental health advocate Vang Xor Xiong (Xorr) has an ability to bridge both worlds in a unique way. Within his role as Partnership Organizer for the Minnesota based Asian American Organizing Project (AAOP), his plans include expanding on his current work to open up opportunity for voices from other marginalized communities such as the Asian American and Pacific Islander (AA/PI) queer population. Contact Information: Instagram: Xorr_X Email: vangxor@aaopmn.org Asian American Organizing Project (AAOP): A Minnesota based non-partisan, non-profit organization that supports the Asian American and Pacific Island Communities across many social platforms including language access, immigration reform and civic engagement. For more information and resources please visit http://aaopmn.org/. Glossary: [i]Soul Calling Ritual: Hmong culture there is the idea that the soul needs to be called if the person is sick or has a broken limb. [ii]The use of herbal medicines or “ khawv koob” (magic formulas) is used to extract the soul form the sick individual. If illness is attributed to a spiritual presence then shamans are used to perform the ritual. [iii]Secret War (Laotian Civil War): Over a nine-year period, between the years 1964 – 1973, more than 2 million tons of artillery were dropped in Laos by the United States. As a result Laos became the most heavily bombed country in global history. Thousands of Hmong soldiers were recruited to fight the Vietnam War by the U.S. during the Secret War.  As a result of the hundreds of thousands of Hmong refugees were displaced, with many resettling in the United States. [iv]18 Clans: In Hmong-American culture there are 18 clans that are related by a common ancestor. Family is a sub component of clan culture. [i] “The Split Horn: The Life of a Hmong Shaman in America”. Public Broadcasting Service.2001. Retrieved from https://www.pbs.org/splithorn/shamanism1.html [ii] “Hmong Traditions Rituals and Ceremonies: Soul Calling”. Hmong And Native Americans.2019. Retrieved from http://www.hmongsandnativeamericans.com/hmong-traditions-rituals-ceremonies-soul-calling/ [iii] “Secret War in Laos”.Legacieis of War: History, Healing,Hope.2019.Retrieved from http://legaciesofwar.org/about-laos/secret-war-laos/ [iv] “Family/Clan Culture”.Ethnogeriatrics: Standford School of Medicine.2019. Retrieved from https://geriatrics.stanford.edu/ethnomed/hmong/introduction/family.html This episode was recorded on 04/17/2019 in St. Paul, MN. For more information and resources on mental illness, education and legislative advocacy please visit the NAMI Minnesota website at namimn.org Efforts related to "Wellness In Color" podcast episodes were supported by the National Center for Advancing Translational Sciences of the National Institutes of Health Award Number UL1TR002494. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Welcome to "Wellness in Color," a podcast series that explores perspectives on mental health to reshape the cultural language of mental illness. Interview Guest: True Thao Interviewers: Amy Wang and Mai Yee Chang Hosted by: Caroline Ludy Produced by: NAMI Minnesota (namimn.org) GUEST BIO:  For twenty years True Thao has provided bilingual and bicultural mental health services to adolescents and adults and has experience working with organizations in the areas of employee mental health, refugee issues and Hmong culture. Understanding the complexity of Hmong lives and the issues affecting the Hmong families and community True currently works with clients at his practice True Thao Counseling Services based in St. Paul, MN. True Thao's website: https://truethaocounseling.com/ True Thao's Facebook page: https://www.facebook.com/True-Thao-Counseling-Services-141059885976834/ This episode was recorded on 02/28/2019 in St. Paul, MN. For more information and resources on mental illness, education and legislative advocacy please visit the NAMI Minnesota website at namimn.org Efforts related to "Wellness In Color" podcast episodes were supported by the National Center for Advancing Translational Sciences of the National Institutes of Health Award Number UL1TR002494. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Welcome to "Wellness in Color", a podcast series that explores perspectives on mental health to reshape the cultural language of mental illness. Interview Guest: John Anthony Burchall Interviewers: Caroline Ludy and Cynthia Fashaw Hosted by: Caroline Ludy Produced by: NAMI Minnesota (namimn.org) GUEST BIO:  A native of Bermuda, a former newspaper reporter, writer, EMT and currently an ordained Baptist Minister, 49 year old John Anthony Burchall talks to Wellness in Color about his understanding of hope and its connection to his own mental health after surviving two suicide attempts. Related Article: "On Vocation: Where Gladness Meets Need" http://www.lyndaleucc.org/sermons/on-vocation-where-gladness-meets-need/ This episode was recorded on 02/11/2019 in St. Paul, MN. For more information and resources on mental illness, education and legislative advocacy please visit the NAMI Minnesota website at namimn.org These efforts were supported by the National Center for Advancing Translational Sciences of the National Institutes of Health Award Number UL1TR002494. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Welcome to "Wellness in Color", a podcast series that explores perspectives on mental health to reshape the cultural language of mental illness. Interview Guest: Aneela Kumar Interviewer: Maritza Steele Hosted by: Caroline Ludy Produced by: NAMI Minnesota (namimn.org) Guest Bio: Born and raised in New York to parents from India, Aneela Kumar shares her story on growing up with anxiety, obsessive compulsive disorder and trichotillomania (an impulse control disorder in which individuals have the compulsive urge to pull out their own hair). Currently a mental health advocate, Aneela talks to Wellness in Color about her struggles with identity, race and religion and how her path to recovery began with the words “shy”, “weird” and “wrong” but continue with “love” and “awareness.” Resources mentioned in this episode: The TLC Foundation for Body-Focused Repetitive Behaviors https://www.bfrb.org/ Free video series "The Noise in Your Head" https://noiseinyourhead.com/free-video-series/ HabitAware Keen device https://habitaware.com/ This episode was recorded on 01/23/2019 in St. Paul, MN. For more information and resources on mental illness, education and legislative advocacy please visit the NAMI Minnesota website at namimn.org These efforts were supported by the National Center for Advancing Translational Sciences of the National Institutes of Health Award Number UL1TR002494. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Welcome to "Wellness in Color", a podcast series that explores perspectives on mental health to reshape the cultural language of mental illness. Interview Guest: Geetanjali Mittal Interviewer: Maritza Steele Hosted by: Caroline Ludy Produced by: NAMI Minnesota (namimn.org) GUEST BIO:  An educator, artist, and internationally-published researcher Geetanjali Mittal shares her Wellness in Color story about navigating the mental health field while establishing roots in the United States. Originally from India, Geet grew up in a variety of cities and has a deep appreciation for different cultures. Before coming to the US, she taught post-graduate English Literature at Panjab University. A strong advocate for social justice Geet is currently studying Community Health at Normandale College. Geet’s Recommended Books: - Book of Mirdad by Mikhail Naimy - Tuesdays with Morrie by Mitch Albom - Forty Rules of Love by Elif Shafak - Secret by Rhonda Byrnes - The Alchemist by Paulo Coelho This quote by Christine Caine helps Geet to motivate her through even the toughest days:  "Sometimes when you're in a dark place you think you've been buried, but you've actually been planted." - Christine Caine In understanding her own journey, Geet commented on how people of color are at a continual odds to feel acceptance and often this parallels their own mental health challenges: "I would also like to say that people of color have to struggle more as there is always a preconceived notion about them, which does not let people see their true self, intelligence and identity. This adds a lot of mental stress in life. I was reading a Disney book to my daughter the other day and I read this quote which very clearly defines the situation of people of color. The story is about a princess Sofia who is not a born princess but becomes one when her mom marries a king. To quote her, "I wasn't born a princess, so sometimes I feel like I have to keep proving I belong."" This episode was recorded on 01/17/2019 in St. Paul, MN. For more information and resources on mental illness, education and legislative advocacy please visit the NAMI Minnesota website at namimn.org These efforts were supported by the National Center for Advancing Translational Sciences of the National Institutes of Health Award Number UL1TR002494. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

With the resumption of moon missions and plans to launch people to Mars, sustaining life and good health in space and for a long time is becoming a federal priority. Now a new interagency agreement between NASA and the Department of Health and Human Services will bring greater cooperation on research. Craig Kundrot, director of space life and physical sciences research at NASA, and Dr. Christopher Austin, director of the National Center for Advancing Translational Sciences at the National Institutes of Health, joined Federal Drive with Tom Temin.

Dealing across several medical and scientific domains, the National Center for Advancing Translational Sciences, part of the National Institutes of Health, is a highly data-driven organization. Sam Michael is chief of the information technology resources branch at N-CATS, joined Federal Drive with Tom Temin for an update on its data and cloud strategies.

World Rare Disease Day is marked on the last day of February by rare disease patient advocates across the globe as a way to raise awareness. This year, the focus of the day will be on research. In recognition of that, we spoke to Anne Pariser, deputy director of the Office of Rare Diseases Research at the National Center for Advancing Translational Sciences. Pariser discussed the changing role of patients in research, efforts to accelerate translational science, and what her office will be doing on World Rare Disease Day.

Original Air Date: OCTOBER 21, 2016 | How many times have you heard it? “Trust your gut!” Well, do you? New findings from a recent clinical study on the human gut bacteria suggest that you should. On today’s show, we’ll learn about one local research team who’ve discovered a groundbreaking link connecting a bacteria type in our intestines’ gut floral with our risk for heart attacks, and can even be an indicator of the severity of heart attacks. And we’ll hear from two leaders at the National Center for Advancing Translational Sciences to discover the present and future of translational science and clinical studies in our community and nationwide.

Under the banner of “Accelerating Research to Improve Health,” the Clinical and Translational Science Institute (CTSI) at the University of California, San Francisco -- the leading university exclusively focused on health -- is part of a shift in biomedical research. This move involves a focus on translational, or bench-to-bedside research, which aims to “translate” biomedical discoveries into useful applications and treatments, such as a drug, device, diagnostic or behavioral intervention, that improves human health and health outcomes. This podcast series is presented by the CTSI and Carry the One Radio – the Science Podcast. CTSI is funded by the National Center for Advancing Translational Sciences at the National Institutes of Health. This series was written and produced by Sama Ahmed and Karuna Meda, and edited by John Daigre and Carly Van Orsdel. Learn more at ctsi.ucsf.edu or www.ctoradio.org

Under the banner of “Accelerating Research to Improve Health,” the Clinical and Translational Science Institute (CTSI) at the University of California, San Francisco -- the leading university exclusively focused on health -- is part of a shift in biomedical research. This move involves a focus on translational, or bench-to-bedside research, which aims to “translate” biomedical discoveries into useful applications and treatments, such as a drug, device, diagnostic or behavioral intervention, that improves human health and health outcomes. This podcast series is presented by the CTSI and Carry the One Radio – the Science Podcast. CTSI is funded by the National Center for Advancing Translational Sciences at the National Institutes of Health. This series was written and produced by Sama Ahmed and Karuna Meda, and edited by John Daigre and Carly Van Orsdel. Learn more at ctsi.ucsf.edu or www.ctoradio.org

Under the banner of “Accelerating Research to Improve Health,” the Clinical and Translational Science Institute (CTSI) at the University of California, San Francisco -- the leading university exclusively focused on health -- is part of a shift in biomedical research. This move involves a focus on translational, or bench-to-bedside research, which aims to “translate” biomedical discoveries into useful applications and treatments, such as a drug, device, diagnostic or behavioral intervention, that improves human health and health outcomes. This podcast series is presented by the CTSI and Carry the One Radio – the Science Podcast. CTSI is funded by the National Center for Advancing Translational Sciences at the National Institutes of Health. This series was written and produced by Sama Ahmed and Karuna Meda, and edited by John Daigre and Carly Van Orsdel. Learn more at ctsi.ucsf.edu or www.ctoradio.org

Under the banner of “Accelerating Research to Improve Health,” the Clinical and Translational Science Institute (CTSI) at the University of California, San Francisco -- the leading university exclusively focused on health -- is part of a shift in biomedical research. This move involves a focus on translational, or bench-to-bedside research, which aims to “translate” biomedical discoveries into useful applications and treatments, such as a drug, device, diagnostic or behavioral intervention, that improves human health and health outcomes. This podcast series is presented by the CTSI and Carry the One Radio – the Science Podcast. CTSI is funded by the National Center for Advancing Translational Sciences at the National Institutes of Health. This series was written and produced by Sama Ahmed and Karuna Meda, and edited by John Daigre and Carly Van Orsdel. Learn more at ctsi.ucsf.edu or www.ctoradio.org

Under the banner of “Accelerating Research to Improve Health,” the Clinical and Translational Science Institute (CTSI) at the University of California, San Francisco -- the leading university exclusively focused on health -- is part of a shift in biomedical research. This move involves a focus on translational, or bench-to-bedside research, which aims to “translate” biomedical discoveries into useful applications and treatments, such as a drug, device, diagnostic or behavioral intervention, that improves human health and health outcomes. This podcast series is presented by the CTSI and Carry the One Radio – the Science Podcast. CTSI is funded by the National Center for Advancing Translational Sciences at the National Institutes of Health. This series was written and produced by Sama Ahmed and Karuna Meda, and edited by John Daigre and Carly Van Orsdel. Learn more at ctsi.ucsf.edu or www.ctoradio.org

Under the banner of “Accelerating Research to Improve Health,” the Clinical and Translational Science Institute (CTSI) at the University of California, San Francisco -- the leading university exclusively focused on health -- is part of a shift in biomedical research. This move involves a focus on translational, or bench-to-bedside research, which aims to “translate” biomedical discoveries into useful applications and treatments, such as a drug, device, diagnostic or behavioral intervention, that improves human health and health outcomes. This podcast series is presented by the CTSI and Carry the One Radio – the Science Podcast. CTSI is funded by the National Center for Advancing Translational Sciences at the National Institutes of Health. This series was written and produced by Sama Ahmed and Karuna Meda, and edited by John Daigre and Carly Van Orsdel. Learn more at ctsi.ucsf.edu or www.ctoradio.org

https://www.einstein.yu.edu - Determined to find a treatment for children with the degenerative brain disease Niemann-Pick Type C, Steven Walkley, D.V.M., Ph.D., turned a serendipitous laboratory discovery into a successful national research collaboration with other academic institutions and the National Center for Advancing Translational Sciences' program for rare diseases (Therapeutics for Rare and Neglected Diseases). These efforts led to an NIH Phase 1 clinical trial testing cyclodextrin as a therapy for children with this disease. Dr. Walkley is a professor in the Dominick P. Purpura Department of Neuroscience and director of the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center at Albert Einstein College of Medicine.

http://www.einstein.yu.edu - Christopher Austin, M.D., director of the National Center for Advancing Translational Sciences (part of the NIH), presents "Catalyzing Translational Innovation" at the 2013 "Transforming Clinical and Translational Research" symposium hosted by the Harold and Muriel Block Institute for Clinical and Translational Research at Einstein and Montefiore (ICTR).