New Zealand Cerebral Palsy Register
Cerebral Palsy Research at Starship Child Health The New Zealand Cerebral Palsy Register (NZCPR)
(National Ethic Approval: HDEC 13/NTA/130)
Background
Cerebral Palsy (CP) is the most common cause of physical disability in childhood, with an approximate international prevalence of 2.0 per 1000 live births. Promisingly, the 2018 Australian Cerebral Palsy Register reports a declining prevalence of 1.4 per 1000 live births in their 2010-2012 birth year period. Most Cerebral Palsy occurs as a result of factors prior to birth, however little is known about these factors and for 80% of people with Cerebral Palsy the cause is unknown. While people with Cerebral Palsy can lead fulfilling lives, having a better understanding on the causes and impact of Cerebral Palsy can help improve the current health services and interventions available.
The New Zealand Cerebral Palsy Register (NZCPR) was established in 2015 and is a coordinated data collection system (confidential database) that will increase our knowledge of people with Cerebral Palsy in New Zealand to help with better planning of health services, compare our practice to overseas experience such as Australia and promote opportunities for research.
The NZCPR has an established national Governance Committee whose purpose is to provide strategic direction and oversight over all the registers activities. To see who the current members of the Governance Committee are, or to get in touch with the register, please follow the link below:
https://nz.cpregister.com/Public/ContactUs
How can a parent or person with cerebral palsy participate in the NZCPR?
Read the patient information sheet which explains how we collect and use the health information related to Cerebral Palsy
Log on to the Cerebral Palsy website https://nz.cpregister.com/Member/Add to self register or complete this Registration Form
Contact the New Zealand Cerebral Palsy Register and they can register your details: nzcpregister@adhb.govt.nz
Ask a medical or allied health professional involved in your care to contact us or register you on your behalf
For Health Professionals
Complete an online notification card on behalf of a patient/parent/caregiver, click on the following link: https://nz.cpregister.com/Notify
Become a Health Professional member of the NZCPR , follow the link https://nz.cpregister.com/Member/Add to create a secure username and password. Once you have done this, you will need to login using your username (this will be your first initial and surname in lowercase).
Interested in using the register to support your research project? Please refer to the NZCPR guidelines https://nz.cpregister.com/Public/Research or contact the NZCPR team: nzcpr@adhb.govt.nz
Contact details
New Zealand Cerebral Palsy Register website: https://nz.cpregister.com
Email: nzcpregister@adhb.govt.nz Tel: (09) 307-4949 ext.21898
NZCPR: Prof Susan Stott (Chair), Dr Anna Mackey & Alexandra Sorhage, Research Officers
NZCPR publications:
NZCPR AusACDPM conference Abstract 2018 (pg7) https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.13665
Related Links:
Cerebral Palsy Society of NZ https://cerebralpalsy.org.nz/
Report of the Australian Cerebral Palsy Register, Birth Years 1995-2012, November 2018 https://cpregister.com/publications-and-other-resources/
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