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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