New Zealand Cerebral Palsy Register
Why have a Cerebral Palsy (CP) Register?
Cerebral Palsy (CP) is the most common cause of physical disability in childhood. There is no known cure and the rates of Cerebral Palsy have remained unchanged despite recent advances in medicine. 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 provides a coordinated data collection system 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.
How was the Register established in New Zealand?
Cerebral Palsy Registers are well established internationally, with many such as the Western Australian Cerebral Palsy Register that have been in operation for over 30 years. The Cerebral Palsy Registers have been successful in creating health benefits for people with Cerebral Palsy at a population wide level and for increasing our understanding of this complex condition.
In New Zealand, many local District Health Boards (DHBs) have established small clinical databases for children with Cerebral Palsy to facilitate health surveillance programmes for these children. However, this has not been a targeted or standardised approach. There was a need to unite these local databases into a quality clinical register, to aim for complete case ascertainment, with set definitions and goals and help to identify and address any regional inequalities in service access and delivery.
Members of the Paediatric Orthopaedic team at Starship with Paediatricians from Auckland and Waitemata DHBs have been working to establish a New Zealand-wide Register for over five years. In 2014, we joined with the well established Australian Cerebral Palsy Register to help make a New Zealand-wide register a reality.
How can I participate?
People with Cerebral Palsy and their whānau / families can enrol in a number of ways:
- Log on to the Cerebral Palsy website https://nz.cpregister.com/ to self-register
- Contact the New Zealand Cerebral Palsy Register and they can register your details: firstname.lastname@example.org
- Ask a medical or allied health professional involved in your care to contact us or register you on your behalf
If you are a health professional and would like to complete an online notification card on behalf of a patient/parent/caregiver, click on the following link: https://nz.cpregister.com/Notify
Meet the Team
Photo (from left to right):
Alexandra Sorhage (Research Officer) and Professor Susan Stott (Clinical Director Paediatric Orthopaedics).
Absent - Anna Mackey (Honorary Research Associate)
Special thanks to the Starship Foundation and its donors for helping to establish this national Cerebral Palsy Register. Funds were raised at the fifth annual Friends of Starship Diamonds & Stars Tea Party in 2014.
More From Starship
If you have any queries or would like to speak with a member of the New Zealand Cerebral Palsy Register team, phone (09) 3074949 Ext 21898 or email email@example.com