Particpants
What is Te Rēhita a Hōkai Nukurangi Aotearoa or the NZ Cerebral Palsy Register?
The Register collects information about your child and their hōkai nukurangi or cerebral palsy (CP) as well as information about other people with CP in Aotearoa New Zealand.
The information that is collected is confidential to the Register.
Why do we need the NZ Cerebral Palsy Register?
We know that CP is the most common cause of physical disability for children in Aotearoa New Zealand. We currently do not know how many people in Aotearoa New Zealand have CP and how CP affects people’s everyday lives. The more people who join the Register, the more information we will have about people with CP in Aotearoa NZ. This information can help to seek further funding as well as guide and improve health services and future treatments for people with CP.
What are the aims of the NZ Cerebral Palsy Register?
The aim of the Register is to collect health information about:
- How many people have CP in Aotearoa New Zealand?
- How CP affects Māori and how are health outcomes for Māori with CP different from other groups?
- What can be changed to improve the future for people with CP and their whānau/families?
What are the benefits of the NZ Cerebral Palsy Register?
The Register is able to combine all the health information on people with CP in Aotearoa NZ, to help health services and disability groups to:
- Understand what living with CP means for different groups (such as Māori or people living in different parts of the country)
- Guide health planning staff, to make sure all people with CP can access the right health services when they are needed
- Promote research about CP so we can learn about what works in preventing and improving health for all people with CP in Aotearoa New Zealand
- Share important information with you and your whānau.
Who are the health professionals who run the Register?
The Register is based at Starship Children’s Health, Auckland, led by Professor Susan Stott, Paediatric Orthopaedic Surgeon together with a team of health professionals from each DHB region in Aotearoa New Zealand. The Register team also includes Dr Anna Mackey and Alexandra Sorhage who are both based at Starship Hospital and work part-time for the Register. The Register team works closely with many health professionals from across all parts of the country.