Neuroscience and mental health
Landmark newborn screening guidelines for spinal muscular atrophy launched
As part of a huge partnership led by researchers and clinicians at the Sydney Children’s Hospital, Randwick, and UNSW Sydney, landmark guidelines endorsed by the NHMRC have been launched.
The guidelines aim is to ensure newborns with Spinal Muscular Atrophy (SMA) receive accurate, rapid and compassionate care while supporting health professionals across Australia and New Zealand. It details each step in the healthcare journey for infants who screen positive for SMA and highlights the importance of timely treatment and coordinated clinical management.
Developed collaboratively by clinicians, laboratory specialists and families with lived experience, the resource includes national recommendations, technical documentation, a family fact sheet and a summary of public consultation feedback.
This resource was led by our Kids Research Neurology teams including the Paediatric Neurology Research group affiliated with the University of NSW Sydney.
Fourth annual colloquium strengthening collaboration in paediatric brain research
The 2025 Developing Brain Clinical Research Colloquium brought together researchers, industry and clinicians to hear the latest health innovations and impacts in neurology, psychiatry and psychology.
The program featured presentations from several leading research leaders and field experts, including keynote addresses from Professor Adam Jaffe and Professor Nadia Badawi AM, exploring the current landscape for rare disease care in NSW and neonatal encephalopathy.
While this was the fourth year the colloquium brought together leading experts in paediatric neurology, psychology and psychiatry, this time a panel discussion on rare disease was promoted. The engaging session talked to the importance of research in childhood dementia, Rett syndrome and use of health data for rare diseases to bring further breakthroughs to the rapidly changing field of science.
The event was supported by the University of Sydney and UNSW Sydney.