Welcome to our Institute Newsletter, March & April 2025 edition.
Our aim is to provide people with completed research led by CPA, our colleagues and international highlights.
If you have any suggestions/feedback for this newsletter or questions for the researchers, please contact us here.
The 2025 Australian Cerebral Palsy Register (ACPR) Bulletin, Birth Years 1995-2018
Authors: Hayley Smithers Sheedy, Sarah McIntyre, Shona Goldsmith, Emma Waight on behalf of the ACPR Group
The 2025 Australian Cerebral Palsy Register (ACPR) Bulletin was published in April. The ACPR exists thanks to a collaboration between the CP Registers and their custodian organisations across each state/territory of Australia. The 2025 Bulletin provides a snap-shot of CP birth prevalence across Australia. Between 1997-98 and 2015-16, the rate of CP declined from 2.4 to 1.5 per 1000 live births and provisional data for the 2017-18 birth years suggest that this decline has continued. You can read the 2025 ACPR Bulletin here and the Community Summary here.
Cord Blood Treatment for Children With Cerebral Palsy: Individual Participant Data Meta-Analysis.
Authors: Megan Finch-Edmondson, Madison C B Paton, Annabel Webb, Mahmoud Reza Ashrafi, Remy K Blatch-Williams, Charles S Cox Jr, Kylie Crompton, Alexandra R Griffin, MinYoung Kim, Steven Kosmach, Joanne Kurtzberg, Masoumeh Nouri, Mi Ri Suh, Jessica Sun, Morteza Zarrabi, Iona Novak
This study analysed global data from 498 children with cerebral palsy (CP) who received umbilical cord blood treatment combined with rehabilitation across 11 clinical trials. It was an Individual Participant Data Meta Analysis (IPDMA), meaning that data for each individual treated in a clinical trial was collated and analysed collectively to obtain a better understanding of the results from the entire body of research. The research confirmed that cord blood is safe and improves movement in children with CP, with the largest benefit seen 6-12 months after treatment. For the first time, authors were also able to demonstrate that higher doses of cord blood were better, and that young children (up to age 5) with milder CP had the best outcomes. These children could be considered “best responders” to cord blood treatment. You can read it here. A commentary by Peter Rosenbaum and Robert Palisano was written about this paper and can be accessed here.
The Need to Standardize the Diagnosis of Cerebral Palsy
Authors: Bhooma R Aravamuthan, Michael C Fahey, Darcy L Fehlings, Iona Novak, Michael C Kruer
This paper considers how the term cerebral palsy is defined, how it can be interpreted in different ways and how this impacts the global picture of cerebral palsy. A diagnostic framework for cerebral palsy that is evidence based, applicable in any context, can be interpreted clearly and confidently by any clinician, and that is inclusive of the differences every person with cerebral palsy experiences, is important and required. The paper emphasises that caregivers of people with cerebral palsy and people with cerebral palsy, should be a key aspect in designing the proposed diagnostic framework.
Sustainable Model of Early Intervention and Telerehabilitation for Children With Cerebral Palsy in Rural Bangladesh: The SMART-CP Randomized Clinical Trial
Authors: Mahmudul Hassan Al Imam, Israt Jahan, Nuruzzaman Khan, Delwar Akbar, Shafiul Islam, Mohammad Muhit, Nadia Badawi, Gulam Khandaker
This study compared usual care to a Sustainable Model of Early Intervention and Telerehabilitation for Children With cerebral palsy (CP) (SMART-CP) in rural Bangladesh. The SMART-CP model consisted of weekly therapy sessions, mother focused support group meetings every 2 weeks and telehealth rehabilitation services every month. 968 children with cerebral palsy were randomly allocated into SMART-CP or the control group. The results showed that people with CP in SMART-CP received earlier diagnoses of CP, accessed more services, therapy and rehab, and had increased use of assistive technology. Survival and clinical outcomes did not differ between groups.
Childhood muscle growth: Reference curves for lower leg muscle volumes and their clinical application in cerebral palsy
Authors: Bart Bolsterlee, Brian V Y Chow, Jonathan Yu, Suzanne Davies, Catherine Morgan, Caroline D Rae, David I Warton, Iona Novak, Ann Lancaster, Gordana C Popovic, Rodrigo R N Rizzo, Claudia Y Rizzo, Iain K Ball, Robert D Herbert
This study used machine learning and magnetic resonance images (MRI) images of lower leg skeletal muscle size in children aged 5-15 years to display how this muscle size differed for each age group. Lower leg skeletal muscle size was compared between 208 typically developing children and 78 children with cerebral palsy who could walk. The results showed that 56% of children with cerebral palsy had smaller overall lower leg muscle volumes for their age, and 80% had one smaller lower leg muscle volume for their age.
A 2-Min Cytomegalovirus (CMV) Awareness Video Improves Pregnant Women's Knowledge and Planned Adherence to Hygiene Precautions
Authors: Tanya Tripathi, Jotara Watson, Hayley Smithers-Sheedy, Kath Swinburn, Natalia Rode, Emma Waight, Annabel Webb, Natasha E Holmes, Hanako Stump, Antonia Shand, Lisa Hui
Congenital cytomegalovirus (cCMV) is a known cause of CP and deafness. Hygiene strategies to reduce the risk of infection in early pregnancy have been shown to be effective in reducing the risk of cCMV. However, awareness of these hygiene precautions is low.
This paper conducted by researchers from the University of Melbourne in collaboration with the team at the Cerebral Palsy Alliance Research Institute, evaluated whether a short educational video on cCMV (available here) was acceptable to pregnant women and whether watching the video impacted the women’s CMV knowledge and planned adherence to hygiene precautions.
Pregnant women (n=296) were recruited from a tertiary maternity hospital clinic. Immediately after watching the video, participant’s mean CMV knowledge scores increased significantly and remained significantly higher than at baseline after 8 weeks. Self-reported implementation of four out of five key hygiene precautions also improved significantly. Participants (99%) reported that they found the video content valuable, and 91% agreed that CMV hygiene precautions were “easy” to follow.
Health literacy of primary caregivers of children with cerebral palsy in low- and middle-income countries: a systematic review
Authors: Genevieve Lilian Perrins, Catherine King, Kousar Azhdari, Israt Jahan, Rosalie Power, Rashidul Hashan, Nadia Badawi, Gulam Khandaker.
This study reviewed articles looking at the health literacy of primary caregivers (PCGs) of children with cerebral palsy (CP) in low- and middle-income countries (LMICs). Health literacy refers to the ability of an individual to understand, seek out and make use of available health related information. The study included articles from 11 LMICs, with none using an appropriate health literacy measurement tool. The analysis showed that literacy levels; the ability to write, read and communicate, greatly affected health literacy. Health literacy of mothers, the most common PCG, varied greatly. You can access it here.
Genetic testing in cerebral palsy with clinical and neuroimaging variables
Authors: Esther Tantsis, Shekeeb Mohammad, Simon P. Paget, Yisselle I. Virella-Perez, Velda Han, Dianah Hadi, Chaya Goldman, Michelle A. Farrar, Michael Fahey, Russell C. Dale, the GENE-CP study group.
Genetic testing has a role in determining CP aetiology; however, there is no consensus on who should be tested. This study asked clinicians around the world about their current approach and then tested their ideas looking back at 100 children, 21 who had been given a genetic diagnosis. The presence of dysmorphic features, intellectual disability, and ‘MRI not compatible with the clinical picture’ are most supportive of a genetic cause of CP. Further research is underway to refine the criteria for genetic testing. You can access it here.
Childhood disabilities, household poverty, and inequality: A population-based case-control study in rural Bangladesh
Authors: Israt Jahan, Tasneem Karim, Risad Sultana, Genevieve Perrins, Mahmudul Hassan Al Imam, Mohammad Muhit, Nadia Badawi, Gulam Khandaker
A recent study from rural Bangladesh has shed light on the challenges faced by children with disabilities and their families. Drawing on population-based data, researchers looked at data from over 1,200 children with disabilities and compared them to children without disabilities. They found that children with disabilities were more likely to live in poverty, be malnourished, and miss out on school. Families with fewer resources also struggled to access healthcare and rehabilitation services. These findings emphasise the urgent need for targeted support and sustained investment to ensure all children with disabilities have the chance to thrive and be included in society.
Proposed updated description of cerebral palsy
Authors: Bernard Dan, Peter Rosenbaum, Lucinda Carr, Martin Gough, John Coughlan, Nonyelum Nweke
Cerebral palsy researchers and clinicians from overseas have recently published a proposed updated description of cerebral palsy. The updated description was developed through a collaborative process, involving stakeholder engagement from people with lived experience, families, clinicians and researchers. Key features of the updated description include articulating the non-degenerative and life-long nature of the condition. The motor types of cerebral palsy are also specified. The authors have also proposed a plain-language description of cerebral palsy, to be used in a variety of different contexts. These are preliminary updates to the description of cerebral palsy, and the authors are inviting feedback. You can access it here.
Research studies and clinical trials are a vital way to identify breakthroughs and advancements in the treatment and prevention of cerebral palsy.
If you have any feedback or questions, please reach out to our research team.
