Register Aims To Capture Health Information On Children With Cerebral Palsy

Every three days a child in Aotearoa New Zealand is born with Hōkai Nukurangi/Cerebral Palsy (CP) but little is known about exactly how many children the condition affects.

In an effort to gather data on the numbers with this condition the Paediatric Society of New Zealand is encouraging people with Cerebral Palsy and their whānau to enter information into Te Rēhita a Hōkai Nukurangi Aotearoa/The New Zealand Cerebral Palsy Register (NZCPR).

Auckland Paediatric Orthopaedic Surgeon, Professor Sue Stott says, “Health professionals that work with whānau with CP can also help the Register and the Cerebral Palsy Society, by notifying the NZCPR (nzcpregister@adhb.govt.nz or following the notification link if any people with CP who would like to know more about the database.”

The NZCPR is a confidential research database of information about people with Cerebral Palsy in Aotearoa New Zealand. Information collected includes birth details, type and severity of CP.

The NZCPR was launched in 2015 and is affiliated with the Australian CP Register, one of the largest CP Registers in the world.

Cerebral Palsy is a permanent physical condition that affects movement and posture. It affects 1 in every 500 babies. It is usually caused by a problem with the development of a part of the brain that controls movement, or damage to these areas. People who have Cerebral Palsy may also sometimes have visual, learning, hearing, speech, intellectual impairments, and epilepsy.

Professor Stott says, “Managing Cerebral Palsy involves a team approach with parents, therapists, doctors, nurses and teachers all contributing.

“The NZCPR aims to capture how many people have Cerebral Palsy in New Zealand and how it impacts them, which will allow us to improve health equity for people with the condition.

“The register also helps to promote research in the field of CP care and allows clinicians to compare our clinical practice to overseas experience.”

In 2022, the NZCPR has begun working with the CP Society to assist them with their equity and advocacy goals.

In September 2022, the NZCPR produced its first report. Te Rēhita a Hōkai Nukurangi Aotearoa Rīpoata 2022 – The New Zealand Cerebral Palsy Register Report 2022 as the first summary of information from people with CP living in Aotearoa New Zealand.

The Register currently has about 55% of the estimated paediatric CP population participating. Of this number, 77% are tamariki and rangatahi aged between 6-21. The report also found that 46% of the CP population are living in the most deprived geographical regions of New Zealand, with a greater representation of Māori individuals compared to non-Māori.

October 6 is World Cerebral Palsy Day and the Cerebral Palsy Society is encouraging people to show their support for people living with CP by wearing green – the international colour for Cerebral Palsy awareness.

Cerebral Palsy Society Chairperson Meg Smith says, “The Be Green, Be Seen campaign aims to celebrate, to embrace diversity, and to help advocate for a more accessible future for everyone. We hoping Kiwis really get on board and help people living with Cerebral Palsy live the lives they want to lead.”

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