The ResearchWorks Podcast

From evidence to practice: factors influencing the implementation of cord blood treatment for cerebral palsy in the United StatesMadison C B Paton, Joanne Kurtzberg, Jessica Sun, Sarah Reedman, Remy Blatch-Williams, Michael Fahey, Iona Novak, Megan Finch-EdmondsonAbstractBackground and aims: Cord blood infusion is an emerging treatment for cerebral palsy (CP) currently offered in the United States through clinical trials and an expanded access pathway. This study aimed to understand the barriers and facilitators influencing implementation of cord blood treatment for CP, to help inform future implementation efforts.Methods: Semi-structured interviews were conducted with US professionals involved in the cord blood treatment program for CP at Duke University and a collaborator site. Data were analyzed using reflexive thematic analysis.Results: From 16 interviews, 5 themes were identified capturing patterned barriers and enablers. Key facilitators included boundary-spanning clinical leadership, interprofessional coordination, dedicated resourcing, responsiveness to community demand, an established safety profile, and a strong research culture. Barriers included the need for cross-disciplinary expertise, uncertainty regarding efficacy evidence, funding and regulatory constraints, and system-level challenges. Participants described that many barriers were overcome to establish the program, while acknowledging that others may persist and are context dependent.Conclusions: Findings highlight that implementation of cord blood treatment for CP is feasible within specialized settings but contingent on local infrastructure, governance, and workforce capacity. Identified facilitators align with established implementation strategies and offer transferable insights, while underscoring the need for regulatory approval, ethical oversight, and system-level supports to enable equitable and sustainable access to emerging regenerative therapies for CP.Keywords: barriers; cerebral palsy; cord blood; facilitators; implementation.https://pubmed.ncbi.nlm.nih.gov/42571975/

Muscle morphology and intramuscular fat after treatment as usual including BonTA in children with cerebral palsy - a commentary and some context.Associate Professor Sian WilliamsDecreased muscle size (muscle atrophy) and fat infiltration have been believed to be two important muscle changes during the growth of children with cerebral palsy (CP). Muscle atrophy has been well demonstrated in short-term studies in the calf muscle (medial gastrocnemius; MG) in children with CP. However, intramuscular fat infiltration has been less studied, mainly because it has been difficult to measure accurately. Therefore, there is a need for long-term follow-up of muscle alteration, including both muscle structure and composition, in children with CP using a technique that can provide reliable, quantitative, and specific measurement.In this study, we used different MRI techniques to evaluate muscle composition including intramuscular fat content changes after a 12-month treatment-as-usual (TAU), starting with the first botulinum neurotoxin A (BoNT-A) injection, in children with CP and typically developing peers. All children with CP received at least one injection into the MG. We measured muscle volume, fascicle length, pennation angle, and intramuscular fat fraction of four lower leg muscles, including both muscles that point the foot downward (plantarflexors) and upward (dorsiflexors).We found that the muscle volume (when adjusted for body size) of all evaluated muscles was not changed after the 12-month TAU in children with CP. Similar results were observed for muscle structure at the fascicle level, including fascicle length and pennation angle. However, the amount of fat within the muscle increased in the MG at the 12-month follow-up.After a 12-month TAU which involves BoNT-A injection, there was no clear evidence of ingoing muscle atrophy in the lower-leg muscles, including both plantarflexors and dorsiflexors. However, we found increased infiltration of intramuscular fat in the injected muscle (MG), suggesting changes in muscle composition despite stable muscle size.https://pubmed.ncbi.nlm.nih.gov/42501405/

Gross Motor Function Measure 66 Item Sets for use with infants and toddlers at high risk for cerebral palsy: construct validity and responsiveness.Natalie A Koziol, Christiana D Butera, Lin-Ya Hsu, Silvana Alves Pereira, Stacey C DusingFunded by AACPDM - Professor Dusing appears on the podcast thanks to the generosity of the AACPDM.AbstractAim: To evaluate the construct validity and responsiveness of the Gross Motor Function Measure-66 Item Set (GMFM-66-IS), a standardized criterion-referenced observational measure, for use with children younger than 24 months with or at high risk for cerebral palsy (CP).Method: Non-experimental integrative data analysis was performed on secondary data from three clinical trials involving children with or at high risk for CP (n = 79, 42 males, mean corrected age = 11.3 months [SD = 4.9]), and one observational study of typically developing children (n = 32, 14 males, mean age = 5.7 months [SD = 0.8]). The GMFM-66-IS and comparator instrument (gross motor subtest from the Bayley Scales of Infant and Toddler Development, Third Edition [Bayley-III] or Bayley Scales of Infant and Toddler Development, Fourth Edition [Bayley-4], depending on the study) were administered at baseline and 3 months later. Comparator groups were based on neurological impairment, clinical rating of gross motor change, and CP status. Correlations (r) and regression-adjusted standardized mean differences (Hedges' g) were computed.Results: GMFM-66-IS and Bayley scores were correlated at baseline (r = 0.83), 3 months later (r = 0.88), and across time (r = 0.83). Children with mild impairment had higher mean GMFM-66-IS scores at baseline (g = 0.87) and 3 months later (g = 0.95). Children rated as demonstrating greater than expected gross motor change had larger mean GMFM-66-IS change scores than children demonstrating less than expected change (g = 0.62). Typically developing children had larger mean GMFM-66-IS change scores (g = 1.00).Interpretation: GMFM-66-IS scores were supported by evidence of strong construct validity and moderate responsivenesshttps://pubmed.ncbi.nlm.nih.gov/39951388/

Profiling the oral language and psychosocial skills of young people attending Flexible Learning Programs.Dr Emily Jacksonhttps://pubmed.ncbi.nlm.nih.gov/41432037/

Swimming for Children with disability: experiences of rehabilitation and swimming professionals in Australia.Karen Graham, Katarina Ostojic, Leanne Johnston ,Iain Dutia, Elizabeth Barnes-Keoghan and Georgina L. ClutterbuckAbstractBackgroundSwimming is a common goal for children with disability, and the most popular sport for children in Australia. This study explored swimming and rehabilitation professionals' perceptions of swimming for Australian children with disability.MethodsRehabilitation and swimming professionals with recent experience working with children with disability completed an online survey.Quantitative data: Binary and Likert-scale questions were analysed descriptively.Qualitative data: Open-ended questions were evaluated using reflexive thematic analysis and mapped to the family of Participation-Related Constructs (fPRC).Results91 swimming professionals and 55 rehabilitation professionals ($n = 146$) responded.Confidence vs. Knowledge:Most were confident supporting children with disability with swimming goals (rehabilitation = 71.6%, swimming = 73.8%).Most had neutral to very low knowledge of para-swimming eligibility and classification (rehabilitation = 75%, swimming = 77.7%).Themes Identified: 10 themes (33 code groups) covering all core elements of the fPRC were identified.Barriers & Facilitators: Included pool accessibility (physical and sensory), program availability, affordability, acceptability (of content and culture), and having accommodating professionals and programs.Program Goals: Professionals believed swimming programs should develop children's confidence, water safety, swimming skills, and fitness.ConclusionRehabilitation and swimming professionals should review existing programs to ensure they meet the needs of children with disability. Further research is needed to create an action plan to improve swimming participation for Australian children with disability.https://www.mdpi.com/1660-4601/22/11/1633

Activating parents in early childhood intervention: a multi-study examination of the PAIR model as an implementation strategy.This study evaluated the PAIR model as a practical tool for implementing family-centred, relational early childhood intervention. Across three linked studies, they found that while brief training improved practitioners' knowledge and confidence, sustained adoption and observable practice change were strongest when training was combined with reflective supervision. The research highlights that organisational barriers, particularly short service blocks and limited time for reflection, remain major constraints. It provides timely evidence on what is required to translate relational approaches into consistent, scalable practice that positions parents as primary agents of their child's development.https://www.tandfonline.com/doi/full/10.1080/1034912X.2026.2651694

Well... actually we are over 300 episodes old but it took a while to get the band back together after the European Academy of Childhood-onset Disabilities conference!Join Dayna, Ash and Marissa (and a special guest appearance by Ed - on video no less!)

Enhancing physically active leisure participation for children with cerebral palsy: a randomised controlled trial.Professor Leanne Sakzewski

ResearchWorks is heading to AACPDM 2026 in Philadelphia this year!We can't wait to see you there - it's a special 80th Annual Meeting for the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM).Join with us as we speak with Dr Kristie Bjornson - live from EACD 2026 in Galway Ireland, the final episode that we recorded on our European tour! A preview of what to expect from this year's annual congress and a look at the host city, Philadelphia!Register here:https://www.aacpdm.org/events/2026/registration

It's the special summary episode of our EACD 2026 conference series live from Galway Ireland! The conference was centred around the F-words and there was a call to action on the clinical application of the F-words.Enjoy the final episode of our European Academy of Childhood-onset Disability Annual Congress series - the ResearchWorks team are on a mini-break, which we hope you'll use to catch up the entire series of episodes from Galway.We'll be back with full length episodes in a few weeks time!Thank you to everyone who came by the booth to say hello, to all of our guests on the show, to Theresa for the generous shout-out in the closing ceremony and to those who keep telling Ed he needs his own podcast, or to record his own audiobook!He's too busy editing the pod to do that but he is very honoured whenever he gets asked for a selfie.... that happens more than you might think! :)

Developmental regression in childhood - identification, investigation and outcomes.

An evidence-based, standardized, and practical diagnostic framework for cerebral palsy.

Avoid the tyranny of orthodoxy, the F-words, goal setting and real life application.

Helping Children Flourish: Parent-Informed Social Narratives to Support Readiness for Upper Limb Rehabilitation in Cerebral Palsy

Health-Related Quality of Life after Guided Growth Treatment for Hip Displacement in Young Children with Cerebral Palsy

The implementation of evidence-based exercise supports (FitSkills) and the impact of young people with disability participating in their communities alongside peer mentors

Building capacity for real world participation.

Neurowashing in Early Intervention: A Review of Neuroscience Rhetoric and an Appraisal Tool.

Optimising the neuroplasticity window: from evidence to early CP intervention

Does multi- level surgery weaken muscles in ambulatory youth with CP?

Non-invasive Measurement of work of breathing in children and young adults with high level cerebral palsy.

Power mobility experience, meaning and outcomes for children with complex non-ambulant cerebral palsy: A scoping review

Why do families not participate in free parent education programs? a cross sectional population based study of preschoolers

Dynamic Movement Intervention, Cuevas Medek Exercises and the state of the evidence. Challenging the status quo.

EACD 2026: Fostering self generated movement with low cost and technology based strategies (Dr Susan Duff, Dr Theresa Sukal Mouton)

Enhancing Mobility in Students with Non-Ambulatory Cerebral Palsy in School Settings: A Scoping Review of the MOVE Program

Beyond tone reduction: functional effects and muscular adaptations after botulinum toxin in children with cerebral palsy.

Randomised Controlled trial of Vision Intervention for Seeing Impaired Babies: Learning through Enrichment (VISIBLE RCT)

Keynote: Changing the conversation on childhood disability: family voices and power of the F-Words

Transforming the experience for families in Early Intervention whilst optimising outcomes for infants and young children with developmental challenges using Ei SMART, a multidisciplinary and co-produced evidence-based framework.

Beyond the labels: How to set goals and identify intervention ingredients for children with childhood-onset disabilities through the novel F-words Lens Tool (instructional)

Implementing low-cost powered mobility devices in children with Cerebral Palsy: from concept to clinical practice  (workshop)

Childhood disability in the 21st Century: Out of the shadows with the world health organisation and some ‘F-words' (Public lecture)What a wonderful way to start this conference. The F-words have been around since 2012 and since then, we have seen an important shift in the field of child-onset disability. What do the F-words mean in practice and how can they be used to support development and to enable children and their families to "being, becoming and belonging"? 

AbstractThis article explores the often-overlooked tragedy of promising happiness through overcoming disability. It draws on qualitative interviews and focus groups with 36 adults with cerebral palsy to explore how medical discourse shapes the ways in which individuals are encouraged to pursue a good life, leading to unintended consequences. Sara Ahmed's theory of happiness is used to understand the dialectics of pursuing a good life through overcoming disability, revealing how medical interventions and discourse during childhood inadvertently contribute to feelings of inferiority and social alienation. The article highlights the need to reconsider how individuals with disabilities are encouraged to pursue a good life, emphasizing the paradox of disabling effects arising from attempts to minimize and overcome disability.https://www.sciencedirect.com/science/article/pii/S027795362500098X

Time toxicity and shared decision-making in cerebral palsyDavid B Frumberg, Paige T Church, Nathan RosenbergPMID: 41387091 DOI: 10.1111/dmcn.70123AbstractClinicians and families regularly enter into a process of shared decision-making. Seldom, if ever, however, is the critical question of time usage, or, more specifically, time-related burdens, accounted for when establishing goals and outcome measures. Time-related burdens are not included, for instance, as an outcome measure in cerebral palsy research-something which may have profound effects about which we are unaware. By contrast, in the field of oncology, time-related burdens, or, more technically, what has been termed time toxicity, has been increasingly studied. Building on that work, we seek to apply the concept of time toxicity to people with disabilities who interface with healthcare at great frequency.https://pubmed.ncbi.nlm.nih.gov/41387091/

From Childhood to Adulthood: Lifespan insights into health and health service needs in cerebral palsyKeynote session: Oceania Academy Of Cerebral Palsy And Other Childhood-onset Disabilities

We catch up with Professor Hércules Ribeiro Leite - to discuss his 2024 top-cited DMCN article!What are the barriers and facilitators to participation of people with Down syndrome? A scoping reviewDeisiane Oliveira Souto, Marina Oliveira de Sousa, Rafaela Guimarães Ferreira, Ana Claudia Brandão, Pedro Brandão Carrera, Hércules Ribeiro LeiteFree articleAbstractAim: To determine the barriers and facilitators of active community participation of children, adolescents, and adults with Down syndrome.Method: Searches were completed in five electronic databases to identify original studies about participation of children, adolescents (ages < 18 years), and adults (ages 18-59 years) with Down syndrome. Barriers and facilitators to participation were categorized into four factors: personal, social, environmental, and policy and programme. Findings were analysed and validated by a young adult with Down syndrome and a family member, using the public and patient involvement strategy.Results: Fourteen studies were included: eight with children and adolescents and six with adults. Of the 14 studies, 10 were qualitative and four quantitative. Most studies (n = 9) investigated participation in physical activities, while only a few examined participation in community/social activities (n = 3), daily activities (n = 2), and leisure activities (n = 1). The most commonly cited barriers and facilitators were the availability of programmes and specialized professionals, transportation, as well as attitudes and behaviours. Physical and psychological characteristics of people with Down syndrome and facilities were also frequently mentioned as barriers. On the other hand, the desire to stay active and personal interest in the activity were among the most frequently reported facilitators.Interpretation: The participation of people with Down syndrome is mainly influenced by physical or psychological factors, the support and attitudes of parents/caregivers, and the availability of specialized programmes. Given the scarcity of research investigating the participation of people with Down syndrome in community activities, daily activities, and leisure, especially in adults, more studies are still needed.

Longitudinal decline in upper-limb range of motion in adults with cerebral palsyErika Cloodt, Jenny Hedberg-Graff, Anna Lindgren, Marianne Arner, Evgenia Manousaki, Katina Pettersson, Elisabet Rodby-BousquetAbstractAim: To analyse longitudinal changes in passive range of motion (ROM) in the upper limb in adults with cerebral palsy (CP).Method: Passive ROM for shoulder abduction and flexion, supination, and elbow and wrist extension was analysed in a longitudinal cohort of adults aged 16 to 76 years from the Swedish CP registry. Individual ROM trajectories and mean ROM curves were calculated using the Manual Ability Classification System (MACS). A mixed-effects model was used to examine changes over 3 to 13 years 7 months.Results: In total, 1395 adults with CP were analysed (769 males, 626 females; median age 26 years). A continuous decline in shoulder ROM, supination, and wrist extension was observed across all MACS levels. Decline rates differed between MACS levels for shoulder flexion, elbow extension, and wrist extension, with steeper declines at higher MACS levels (levels IV and V). Adults classified in lower MACS levels (I and II) had greater initial ROM and slower declines compared to adults classified in higher MACS levels.Interpretation: Upper-limb ROM continuously declined in adults with CP, particularly at higher MACS levels. The varied decline rates highlight the need for tailored interventions and systematic follow-up to maintain ROM and functional ability, especially among individuals at higher risk.

Hip Displacement in Spastic Hemiplegia: Increased Risk with Hip Internal Rotation and Adduction Irrespective of Sagittal Gait PatternZhe Yuan, Alexander Aretakis, Chris Church, M Wade Shrader, Freeman Miller, Anuj Gupta, Arianna Trionfo, Jason J HowardAbstractBackground: Hip displacement (HD), common in cerebral palsy (CP), is reportedly less prevalent for spastic hemiplegia. Patients with a Winter-Gage-Hicks (WGH) type IV gait pattern are believed at increased risk of HD, but true prevalence is unknown. This study aimed to analyze the rates of HD according to the sagittal plane-based WGH classification and identify associated risk factors.Methods: Patients with hemiplegic CP, ≥1 instrumented gait analysis (IGA), hip surveillance radiograph(s), and minimum 2-year follow-up were included. The primary outcome was presence of an "unsuccessful hip" defined as a migration percentage ≥30% and/or undergoing reconstructive osteotomies for HD. Secondary outcome variables included WGH type, previous surgery, sex, scoliosis, epilepsy, ventriculoperitoneal shunt, gastrostomy tube, and IGA-derived hip kinematics.Results: Included were 144 patients (39.6% female), classified as Gross Motor Function Classification System I (45.1%) or II (54.9%), mean follow-up 9.6 ± 4.6 years. Seventeen patients (11.8%) had an unsuccessful hip outcome (age 11.6 ± 3.6 years). Stratified by WGH type, unsuccessful hip outcome rates were I: 9.5% (2/21), II: 9.4% (6/64), III: 6.7% (2/30), and IV: 24.1% (7/29); age at onset was not different between WGH types (p = 0.8). Multivariate analysis identified hip internal rotation (odds ratio [OR]: 4.7, confidence interval [CI]: 1.2-18.1, p = 0.02) and hip adduction (OR: 5.2, CI: 1.2-22.1, p = 0.02) as significant independent risk factors.Conclusion: The rates of HD in spastic hemiplegia were higher than expected for all WGH types, particularly IV. A high index of suspicion and regular hip surveillance radiographs is required for patients with hip internal rotation and adduction, starting during preadolescence.Level of evidence: III-Retrospective cohort observational study. See Instructions for Authors for a complete description of levels of evidence.

EACD 2026 - Galway, Ireland. "‘Mol an Óige agus Tiocfaidh Siad'​ - Encourage the young and they will flourish​".We catch up with Dr Hazel Killeen President, EACD Annual Congress 2026 Lecturer in Occupational Therapy College of Medicine, Nursing and Health Sciences, University of Galway and Dr Rory O'Sullivan Scientific Chair, EACD Annual Congress 2026 Head of Strategy & Innovation, Central Remedial Clinic.It was an honour to sit down with the organisers of this years European congress and discuss the upcoming conference and encourage you to visit Galway this June (2026). It will be an incredible conference and the ResearchWorks team will also be there to interview keynotes and other incredible speakers from across the globe!There is still time to register, so visit the link below for more information.https://www.eacd2026.com/

Join Dayna and Marissa on an extended episode back, after the Oceania Conference 2026, with the one and only Dr Brian Hoare. A candid conversation about: More isn't always better: getting smarter about therapy dosage in children with cerebral palsy.Join us for a wonderful look at why it isn't just about doing more - dosage is far more complex than that and we - as therapists and researchers - need to get smarter about this, especially for children with cerebral palsy.

A brilliant conference that has come to a close but we are excited about the implications both for the future and what we can implement into clinical practice today.Dayna and Marissa walk through some of their favourite moments, interviews and the conference. Also... who doesn't like a good acronym?

We catch up with Dr Joline Brandenburg!An incredible conversation, all about: Developmental Neuromotor Disorders have altered Motor Neuron Morphology and Survival.A continuing series of interviews from Oceania Conference 2026 - live from Hobart, Tasmania, Australia.

We have the opportunity to speak to the wonderful Dr Alison Salt and Dr Nofar Ben Izak - fellow Perth-ians, but meeting across the other side of our continent! We get to speak with them both about the European Cerebral Visual Impairment Clinical Practice Guidelines.A continuing series from Oceania Conference 2026, live from Hobart, Tasmania, Australia!

We catch up with friend of the show, Dr Theresa Sukal-Moulton!It's our pleasure to speak with her about: Selective motor control changes from term age to 3 months of age in infants both with and without cerebral palsy.A continuing series from Oceania Conference 2026, live from Hobart, Tasmania, Australia.

It's always a privilege to speak with Monica - we have the chance to talk to her about: Hammersmith Infant Neurological Examination findings in infants with hemiplegic cerebral palsy from 3 to 24 months.A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia!

We catch up with an old friend - Dr Iain Dutia to discuss all things fatigue.Understanding cognitive fatigue in people with cerebral palsyA continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia.

It's our pleasure to have Anne McNee on the pod - discussing: Evaluating the Effectiveness of Serial Casting for Idiopathic Toe Walking in Children with Autism Spectrum Disorder.A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia.

We catch up with Dr Fiona Russo! We're discussing her paper: Four Layers Deep: Co-Designing a Community-Led Online Navigation Program for Families of Young Children with Cerebral Palsy.A continuing series from Oceania Conference 2026 - live from Hobart, Tasmania, Australia.

Validation and Responsiveness of activity limitation testing in framerunning for children and young people with CP.We catch up with friend of the show Dr Reedman and Healthy Strides' Sam King!Validation and Responsiveness of activity limitation testing in framerunning for children and young people with CP.

We catch up with Rachel Byrne - Executive Director at the Cerebral Palsy Foundation. We have the chance to discuss the topic of Scaling Australian clinical breakthroughs into a global CP roadmap.From Australian Advances to a Global Roadmap for Cerebral PalsyA continuing series from the Oceania 2026 Conference, live from Hobart, Tasmania, Australia.