16 Dec 2025
A big congratulations to our Neurodevelopment Clinical Network, which has reached an exciting milestone in updating the national clinical guidance for children and young people with Down syndrome in Aotearoa.
The previous guidance was more than 25 years old, and rather than simply “refreshing” it, the workstream has taken a new approach to make the material clearer, easier to navigate, and better aligned with current evidence and practice.
This represents a significant body of work and is a testament to the power of clinical networks in bringing expert knowledge together and turning it into practical, high-value resources.
What is now available
The key overview document is now live on Starship:
Down syndrome (Trisomy 21): overview and general principles
From that page, you can also access updated clinical guidance on:
- Atlanto axial instability (AAI)
- Cardiac issues
- Gastrointestinal issues including Coeliac Disease
- Musculoskeletal problems
- Post natal diagnosis and counselling
- Thyroid disorders
- Vision and eye health
Further documents are already in the pipeline and will be released gradually, rather than waiting for everything to be finalised at once.
Acknowledgements
This work has been led by Rosie Marks, with current workstream members:
- Sara Edwards
- Merryn Robertson
- Heidi Meyer
- Janine Thomson
- Anna Tiatia Fa’atoese Latu
- Awras Majeed
Ngā mihi nui to all the specialists who have drafted and reviewed the documents, and special thanks to Susan Cato-Symonds at Starship Hospital for her coordination and mahi on this project.
How you can use and share this
- Please review the overview document and the related guidelines relevant to your practice.
- Share the link within your services and teams so colleagues are aware of the updated national guidance.
- Feed back any issues or suggestions via the Neurodevelopment Clinical Network.