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CPA Research Institute newsletter

September 2026

Welcome to the 2026 September Research Institute Newsletter. Bringing you recent updates about Professor Iona Novak AM, neonatal palliative care, anakinra for preterm infants and more!

This newsletter consists of short summaries of completed research led by the CPA Research Institute, our colleagues, international highlights, and information about CPA Research Institute studies which are currently recruiting. 

Please see the glossary located at the bottom with definitions for bolded keywords used within summaries. Keywords in summaries will only be bolded the first time they are used.

If you have any suggestions/feedback for this newsletter or questions for the researchers, please contact us here.

Research Spotlight

Professor Iona Novak AM was recently awarded with the 2026 American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) Lifetime Achievement Award at the AACPDM 80th Annual Meeting in Philadelphia. This prestigious award recognises Iona’s outstanding contributions to research and her work improving outcomes for people with cerebral palsy and other childhood-onset disabilities.

Research led by Collaborators

Nutrition and Hydration Decisions in Neonatal Palliative Care

Authors: Amit Trivedi, Nadia Badawi, Brian S Carter, Ahmed Moustafa, Anne Preisz

When a baby is receiving palliative care, decisions about providing food and fluids through medical treatments can be difficult for families and healthcare teams. This review discusses how these decisions should be based on what is most comfortable and beneficial for the baby, rather than assuming that medical feeding or hydration is always required. The authors highlight the importance of understanding each family’s values, beliefs, and goals of care and making decisions together with healthcare professionals. They recommend regularly reviewing the baby’s needs and focusing on comfort, quality of life, and family-centred care when considering nutrition and hydration in end-of-life situations. Find out more here.

Model-Informed Dose Optimization of Anakinra in Preterm Neonates Implications for Safe and Effective Dosing

Authors: Jia Li, David K Metz, Elys Green, Gergely Toldi, Robert Galinsky, Megan Clark, Rebecka Atkinson, Ina Rudloff, Josephine C Owen, Sara K DiSimone, Samuel C Forster, Steven X Cho, Atif Majid, Graeme R Polglase, Marcel Favilla, Pramod Pharande, Atul Malhotra, Calum T Roberts, Scott H Stansfield, Arvind Sehgal, Kenneth Tan, Alistair J Gunn, Philip J Berger, Alex Veldman, Rod W Hunt, Claudia A Nold-Petry, Marcel F Nold, Carl M J Kirkpatrick

Inflammation may contribute to brain injury in very premature babies, which can increase the risk of conditions such as cerebral palsy (CP). This study looked at how the anti-inflammatory medicine anakinra is processed in the bodies of extremely preterm infants. Researchers found that babies clear the medicine from their bodies more quickly as they grow during the first days after birth. Using computer modelling, they identified dosing schedules that are more likely to provide effective treatment while maintaining safety. These findings will help guide future clinical trials and support the development of more precise treatments aimed at reducing inflammation-related complications in preterm babies. Find out more here.

Risk factor profiles in infants born preterm and at term with cerebral palsy in Argentina: Findings from the Argentine Cerebral Palsy Register

Authors: M Mercedes Ruiz Brunner, Carla Gil, María Elisabeth Cieri, Ana Laura Condinanzi, L Johana Escobar Zuluaga, Federico Sanchez, Gulam Khandaker, Israt Jahan, Nadia Badawi, Eduardo Cuestas

This study looked at common risk factors in people with cerebral palsy (CP) in Argentina and found that the patterns differed for those born preterm compared with those born at term. Children born preterm were more likely to have experienced complications linked to early birth, such as low birthweight, breathing problems, and longer stays in hospital. For children born at term, factors such as limited access to prenatal care, birth complications, and social challenges were more common. Understanding these different risk factor patterns may help healthcare providers identify children at risk earlier, improve support for families, and guide strategies to prevent CP where possible.

Take part in a research study

Research studies and clinical trials are a vital way to identify breakthroughs and advancements in the treatment and prevention of cerebral palsy.

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Glossary

  • Anakinra: An anti-inflammatory medicine being studied to reduce inflammation-related injury in very premature babies.
  • Born at term: Refers to babies born after a full-term pregnancy, usually between 37 and 42 weeks of gestation.
  • Born preterm: Born before 37 completed weeks of pregnancy.
  • Cerebral palsy (CP): A complex physical condition that affects how a person’s muscles work and how they move throughout their lives. It is caused by early damage to part of the brain, which doesn’t worsen over time but it’s consequences can become more impactful. Each person with CP is unique, and while all having some degree of physical disability, many experience additional learning, communication, visual and/or other challenges. (Dan et al., 2026)
  • Clinical trials: Research studies involving participants that test the safety and effectiveness of treatments.
  • Computer modelling: The use of computer-based simulations to predict how medicines or biological processes behave.
  • Dosing schedules: Planned amounts and timing of medicine administration.
  • End-of-life: The period when a person is approaching death and care focuses on comfort and quality of life.
  • Extremely preterm infants: Babies born very early in pregnancy, typically before 28 weeks’ gestation.
  • Inflammation: The body’s immune response to injury or infection, which can sometimes cause tissue damage.
  • Palliative care: Specialised care focused on improving comfort and quality of life for people with serious illnesses and their families.
  • Premature babies: Babies born before full-term pregnancy.
  • Prenatal care: Healthcare and monitoring provided during pregnancy.
  • Risk factors: Characteristics or circumstances associated with a higher likelihood of developing a condition.

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