Australian Cerebral Palsy Register
The Australian Cerebral Palsy Register (ACPR) is a confidential research database of information about people with cerebral palsy in Australia. Information collected about each person with cerebral palsy includes birth details, type and severity of cerebral palsy, other associated impairments and parent demographics. The ACPR consolidates de-identified information from the CP Registers in each Australian state and territory to provide a national picture of cerebral palsy. The ACPR was launched in 2007 and will be one of the largest CP Registers in the world.
The overarching vision for the ACPR is that the register should exist to assist in efforts to both reduce the incidence of cerebral palsy and significantly enhance the quality of life of those living with cerebral palsy. The main aims of the register are to:
- Monitor trends of cerebral palsy
- Gain further understanding about the causes of cerebral palsy
- Develop and evaluate preventative strategies
- Assist in planning services for people who have cerebral palsy.
The ACPR will provide a national framework for research. The ACPR will increase the scope of research into cerebral palsy and will improve research quality by providing access to a large population sample. The information contained on the register will assist with research projects that focus on causes, prevention and management of cerebral palsy. In addition, the register will generate reports on demographics, frequency, distribution and severity for government and service providers. This will enable better planning for the present and future service provision needs of people with cerebral palsy.
The second report of the Australian Cerebral Palsy Register, Birth Years 1993-2009 is now available on the website of the CP Register. This report is the key resource to describe the profile of cerebral palsy in Australia and is of interest to all those working with children or adults with cerebral palsy, individuals with cerebral palsy and their families and carers.
The ACPR Research and Policy Group includes a representative from each Australian state and territory cerebral palsy register. This group is able to provide consultation to researchers who are seeking advice regarding cerebral palsy research and accessing identified and non-identified cerebral palsy register data within Australia.
Do you have a child with cerebral palsy?
Do you live in or was your child born in Australia?
If the answer is yes – we need you! Each individual’s information will assist in better understanding the needs of people with cerebral palsy, their families and the community in which they live and will contribute to a greater understanding of cerebral palsy.
Joining the CP Register is easy, so please visit the ACPR website for information about how you can join the CP Register today on the Australian CP Register website.
Health professionals can support the work of the register by connecting families with the CP Register through an easy notification process.
Contact your state or territory CP Register today to find out more. Details are listed on the Contact Us page on the Australian CP Register website.
For further information, please email: firstname.lastname@example.org