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Welcome to our Institute Newsletter, June 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.
Cerebral palsy
Authors: Iona Novak, Michelle Jackman, Megan Finch-Edmondson, Michael Fahey
Published in the Lancet, this invited paper addressed the research priorities of people with cerebral palsy and their families. It provided an in-depth analysis of the best evidence available to highlight the latest progress made in diagnosing, preventing and managing cerebral palsy.
A contemporary global approach is required to understand consanguinity and disability
Authors: Nadia Badawi, Ahmed Moustafa, Gulam Khandaker, Sarah McIntyre
This editorial explored the current global relationship between consanguinity – relationships between biologically related partners – and disability. Consanguinity has been increasingly identified as a risk factor for conditions like cerebral palsy, yet it remains a common cultural practice in many parts of the world. The impact on families varies greatly depending on financial resources, cultural attitudes towards disability and available support systems. As globally displacement reaches record levels, differences in legal frameworks and disability services between countries presents new challenges. International collaboration is called upon to develop culturally respectful, inclusive, and informed healthcare systems that empower families and respond to the complex realities of consanguinity and disability worldwide. Find out more here.
Educating antenatal patients about cytomegalovirus infection: An e-learning package improves general practitioners’ knowledge and intention to implement clinical guidelines
Hayley Smithers-Sheedy, Katherine Swinburn, Natalia Rode, Tanya Tripathi, Natasha Holmes, Emma Waight, Annabel Webb, Philip N Britton, Hugh Stump, Antonia Shand, Lisa Hu
This study examined whether the ‘Infections in Pregnancy’ e-learning module improved Australian General Practitioners (GPs) knowledge and confidence in counselling pregnant patients about cytomegalovirus (CMV) infection risk-reduction. Most GPs had not previously received CMV education and did not feel confident in providing advice prior to completing the eLearning module. A pre-post study design revealed significant increases in GP knowledge and confidence in CMV counselling after completing the 30-minute module (P<0.001). Importantly, the proportion of GPs intending to provide CMV information to pregnant women increased from 24% to 97%. These positive changes largely persisted eight weeks later, indicating the module’s effectiveness in supporting national CMV guideline. Find out more here.
Longitudinal observational research study: establishing the Australasian Congenital Cytomegalovirus Register (ACMVR)
Preethi Chandrasekaran, Asha Bowen, Cheryl A Jones, Valerie Sung, Julia E Clark, P N Britton, Pamela Palasanthiran, Emma Waight, Alanna N Gillespie, Hayley Smithers Sheedy and the ACMVR Group
The Australasian Congenital Cytomegalovirus Register (ACMVR) is a longitudinal observational research study established to understand the clinical characteristics, antiviral therapy use, and long-term neurodevelopmental outcomes of Australian children with congenital CMV (cCMV). cCMV is a significant cause of lifelong disability, affecting an estimated 1 in 200 Australian infants. Register recruitment sites include tertiary hospitals in Sydney, Melbourne, Brisbane and Perth with future plans for expansion and collaborations. It is expected that research from the ACMVR will inform future policy on cCMV screening and treatment. Find out more here.
New Genetics information video released
Authors: Natasha Garrity, Yana Wilson, Sarah McIntyre
As genetic research into cerebral palsy (CP) continues to advance, a series of research summary videos designed for the general public will be created. The latest video highlights key findings from CP genetics studies published in 2024.
In this video (access here), the following points are explored:
Hopefully this video helps make complex research more accessible and meaningful for families, clinicians, and the broader community.
Implementation Fidelity of a Smartphone Application for Population-Based General Movement Assessment: the Early Moves Study
Authors: Caroline F Alexander, Sarah E Hall, Alison Salt, Alicia Spittle, Catherine Morgan, Tiffany Grisbrook, Alishum Ali, Natasha Amery, Sue-Anne Davidson, Ashleigh Thornton, Mary Sharp, Emily Young, Robert S Ware, Desiree Silva, Roslyn Ward, Nadia Badawi, Samudragupta Bora, Roslyn N Boyd, Susan Woolfenden, Catherine Elliott, Jane Valentine
This study assessed how well the Baby Moves smartphone app was used to collect videos for the General Movements Assessment (GMA), a tool that helps detect neurodevelopmental disorders in infants. Part of the Early Moves project in Perth, the study found that 76% of parents submitted at least one scorable video, although more than 69% needed reminders. While the infants were broadly representative of the general population, participating mothers were more often from higher socioeconomic areas and mostly Caucasian. The results show the app is effective for collecting GMA videos, but inclusive recruitment is essential to better reach priority and diverse families. Find out more here.
Ambulant children with cerebral palsy have similar leg muscle moment arms to typically developing children
Authors: Bart Bolsterlee, Brian V Y Chow, Catherine Morgan, Iona Novak, Caroline Rae, Suzanne Davies, Ann Lancaster, Rodrigo R N Rizzo, Claudia Y Rizzo, Robert D Herbert
This study compared the leg muscle moment arms in 79 ambulant children with cerebral palsy (CP) and 200 typically developing children aged 5-15. Moment arms reflect how muscles and joints work together to create movement or stability. Results showed although there were small differences in leg muscle moment arms between the two groups, these differences were not significant enough to explain major ankle joint problems in children with CP. Find out more here.
How a Microfinance-Based Livelihood Program can Combat Food Insecurity Among Families of Children With Cerebral Palsy in Bangladesh-Evidence From a Randomized Control Trial
Authors: Nuruzzaman Khan, Mahmudul Hassan Al Imam, Israt Jahan, Mohammad Muhit, Nadia Badawi, Gulam Khandaker
Food insecurity is of significant concern for families with cerebral palsy in Bangladesh, with the COVID-19 pandemic only worsening the situation. This randomized trial explored whether a microfinance-based livelihood program, combined with community rehabilitation, could improve the access to food for these families. In this trial 251 children aged ≤5 years and their primary caregivers received either the combined program, rehabilitation alone, or usual care. Families who received the combined program displayed the greatest increase in access to food, followed by those who received rehabilitation alone and then those who received only usual care. Find out more here.
Research studies and clinical trials are a vital way to identify breakthroughs and advancements in the treatment and prevention of cerebral palsy.
