Child cerebral palsy register
People with cerebral palsy (CP) and their families in the Northern Territory (NT) are asked to join the Northern Territory Cerebral Palsy Register and the Australian Cerebral Palsy Register.
These registers collect clinical information about CP to help with research across Australia.
Registration for both is voluntary.
By joining you are helping to do all of the following:
- monitor trends
- understand causes
- develop prevention
- help plan services.
Each state and territory has their own register. The Australian register provides a national picture of cerebral palsy.
Questions you will be asked
You will be asked to give birth details, the type and severity of cerebral palsy in the child, other associated impairments and information about the parents.
You must give signed consent to join the NT register. There are different levels of consent.
You can choose from any of the following:
- the collection, recording and storage of information on your state or territory register - this may include birth and medical records
- the transfer of information to the Australian Cerebral Palsy Register that does not include any identification of the person with CP
- to receive invitations to take part in research projects
- to nominate a health professional to help complete and verify your information.
How to give consent
You can either:
- fill out the cerebral palsy consent form and send to the Centre for Disease Control
- or call the NT register on (08) 8922 8044 and ask to be sent a form.
How to register
To join the NT Cerebral Palsy Register you should call the Centre for Disease Control on (08) 8922 8044 or email email@example.com.
To join the Australian register, go to the Australian Cerebral Palsy register website and submit your details. You will also need to complete a consent form.
You can also give your health practitioner or education professional permission to register your details.
Your information is strictly confidential and will only be seen by the NT register staff.
Information included in the Australian CP Register, any reports written from the register or information given to researchers or members of the public will not include your personal details.
If you consent, you may be asked to join in a research study.
You can contact researchers directly or decline to join.
If you have any concerns or complaints contact the Menzies School of Health Research.
Human Research Ethics Committee
Menzies School of Health Research
John Matthews Building
Building 58, Royal Darwin Hospital
Tiwi NT 0810
PO Box 41096
Casurina NT 0811
Phone: (08) 8922 8196
Fax: (08) 8927 5187
Last updated: 13 May 2016