CPA Research Institute newsletter

July 2025

Welcome to our Institute Newsletter, July 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.

Research led by Cerebral Palsy Alliance Research Institute

Simplifying the language in the proposed description of cerebral palsy: Less is more

Authors: Hayley Smithers-Sheedy, Shona Goldsmith, Catherine Gibson, Susan Margaret Reid, Michele Hansen, Linda Watson, Megan Auld, Nadai Badawi, Sarah McIntyre

A commentary was published from the Australian Cerebral Palsy Register (ACPR) Group on the proposed updated description of cerebral palsy (CP) by Dan et al. 2025. The team endorsed the proposed description’s framing of CP as a lifelong, neurodevelopmental condition that is not degenerative. To improve clarity, the ACPR Group recommended simplifying the language, improving the structure, and using strength-based terms within the proposed description. The group also suggested aligning the plain-language version more closely with the updated description to avoid confusion and to better describe the heterogeneity of CP. They proposed that the authors consider development of video resources featuring people with CP from across the world discussing ‘What is CP?” – see examples https://cerebralpalsy.org.au/news-stories/cerebral-palsy-alliance-launches-new-what-is-cp-video-series/. Read the commentary here.

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The proposed updated description of cerebral palsy: Through the lens of lived experience

Authors: Georgina Henry, Natasha Garrity, Leanne Diviney.

Written from the perspective of lived experiences, a commentary on the proposed updated description of cerebral palsy (CP) by Dan et al. 2025 was published on behalf of Cerebral Palsy Alliance. The commentary compiled feedback from CP Quest and CPActive members on the proposed changes, particularly about the plain language version. Overall, most preferred the new description and found the plain language description useful. The importance of using inclusive strengths-based language and avoiding stigmatizing terms was emphasized. Recommendations included clarifying the lifelong, non-degenerative nature of CP in the plain language description. Recognising the value of community support was also suggested. Making the plain-language description widely accessible is vital for impact beyond academia – whether this be through the development of audio-visual guides or easy-ready descriptions.

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Research led by Collaborators

Towards universal early screening for cerebral palsy: a roadmap for automated General Movements Assessment

Authors: Alicia J Spittle, Peter B Marschik, Lars Adde, Nadia Badawi, Rachel Byrne, Arend F Bos, Alain Chatelin, John Coughlan, Francesca Fedeli, Andrea Guzzetta, Edmond S L Ho, Michelle J Johnson, Amanda Kwong, Alistair McEwan, Catherine Morgan, Anderson Mughogho, Deirdre M Murray, Silvia Orlandi, Colleen Peyton, Laura A Prosser, Anina Ritterband-Rosenbaum, Truyen Tran, Dajie Zhang, Elyse Passmore

The General Movements Assessment (GMA) helps identify infants at high risk of neurodevelopmental conditions like cerebral palsy (CP). As trained professionals are limited and early diagnosis is crucial, experts are exploring Artificial Intelligence (AI) to expand access worldwide. An international group—including researchers, clinicians, engineers, legal experts, and people with lived experience—created a roadmap for developing and implementing AI-based GMA for universal CP screening. The plan outlines five steps: 1) establishing universal standards for the data collected, 2) developing and checking the accuracy and consistency of AI GMA, 3) creating software and research trials, 4) meeting regulatory requirements, and 5) planning rollout. This approach aims to improve global early detection. Find out more here.

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A description and a diagnostic framework: Synergy for practical cerebral palsy diagnosis and care

Authors: Bhooma Aravamuthan, Darcy Fehlings, Iona Novak, Michael Fahey, Eileen Fowler, Michael Kruer, Henry Chambers

This letter responds to the updated description of cerebral palsy (CP) proposed by Dan et al. (2025). The authors praise the new description for involving caregivers in its development and for shifting from a strict definition to a more person-centred description that reflects individual differences. They note that the description does not provide diagnostic guidance but importantly acknowledges that people with CP have a higher risk of additional conditions, such as early-onset dementia. The letter stresses that CP diagnosis should be universally accessible, not dependent on imaging alone, and calls for an evidence-based diagnostic framework to guide families and clinicians. Read the commentary here.

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Persistent inflammation and white matter damage in the preterm brain: Insights from a novel ovine model of chronic inflammation

Authors: Abdul Razak, Amy E Sutherland, Yen Pham, Tamara Yawno, Ilias Nitsos, Lindsay Zhou, Tegan A White, Charmaine Rock, Rod W Hunt, Atul Malhotra, Beth J Allison, Suzanne L Miller, Courtney A McDonald

Persistent inflammation is known to occur during preterm brain injury. Using a new sheep model, this study looked at how long-term inflammation impacts the developing brain in preterm babies. The authors found that ongoing inflammation damaged brain white matter and interfered with brain repair. This sheep model offers a valuable tool for testing treatments that could protect the preterm brain and improve long-term outcomes. More important research in this area is needed. Find out more here.

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Mapping the effects of nurses' developmental care education on infants and families in a surgical neonatal intensive care unit: An observational study

Authors: Nadine Griffiths, Annabel Webb, Sharon Laing, Kaye Spence, Himanshu Popat, Lynn Sinclair

This paper looked at how educating nurses in developmental care (DC) impacts preterm infants and their families in a surgical neonatal intensive care unit (sNICU). Nurses with DC training are better prepared to support a baby’s growth by reducing stress, encouraging parent involvement and creating a nurturing environment. Families reported feeling more confident and included in their baby’s care when looked after by a nurse with DC training, while infants experienced calmer, more supportive interactions. The study shows that DC trained nurses may improve the baby’s health and comfort and strengthen family wellbeing and parent–infant bonding during a stressful time. Find out more here.

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Early Neurodevelopment of Extremely Preterm Infants Administered Autologous Cord Blood Cell Therapy: Secondary Analysis of a Nonrandomized Clinical Trial

Authors: Lindsay Zhou, Abdul Razak, Courtney A McDonald, Tamara Yawno, David T McHugh, Gillian Whiteley, Kristyn Connelly, Vathana Sackett, Suzanne L Miller, Graham Jenkin, Iona Novak, Rod W Hunt, Atul Malhotra

Umbilical cord blood derived cells are increasingly being researched as treatments for preterm brain injury. This study explored whether giving 23 extremely preterm infants their own cord blood was safe and feasible on top of routine care, when compared with 93 infants who only received routine care. The cord blood infusion was safe and able to be completed. There were no major differences in brain imaging, movement or neurodevelopmental outcomes for either group at 52-54 weeks of age, with no infant in either group receiving an early diagnosis of cerebral palsy. Find out more here.

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