How to register

 

Becoming a Queensland Cerebral Palsy Register member will help us gather information that will guide research into the causes, prevention, effective treatment and service provision of cerebral palsy.

There are two steps to register.

 Step 1. Download the PDF Consent form to print out, fill in and send to the QCPR. Your registration cannot be included on the register until your consent is received by the QCPR.

 Step 2. There are 2 options here. Either;

2a. Download the PDF Registration Form to print out, fill in and return to the QCPR, or

2b. Complete the secure online registration by signing up for online membership and completing and submitting a new cerebral palsy record online. You will have to complete step 1 in both cases.

You will need to know some specific information to complete the registration. If you register online, there is a link to the GMFCS and MACS classifications but if you register by printing and posting the form you can use these links. Both the GMFCS in different languages and the MACS in different languages are available.

Don’t worry if you can’t complete every single item. Complete as much as you can and send it back. Register staff will contact you either when data becomes available, such as after 5 years of age, or to find out where the data can be found, such as a medical record. Just send back what you can, and the register will do the rest.

If you have any difficulties or questions about your registration, please do not hesitate to contact us.

 

What will happen once you register?

Information

Firstly, there is no further action required on your part. QCPR Members will receive information and regular updates from the CP Register but you don’t have to perform any duties after registration.

Australian Cerebral Palsy Register

If you give your consent, information collected by the QCPR is transferred into de-identified data*, and then sent to the Australian Cerebral Palsy Register. There is a separate consent item for this and it will only happen if you let us know that you agree. The Australian Cerebral Palsy Register collates information about the population of people in Australia who have cerebral palsy.

*De-identified data does not contain information which identifies individuals, such as name or address, and therefore you will never receive correspondence or any communication from the Australian Cerebral Palsy Register.

Your privacy protection

In fact, you will never receive correspondence from anyone else due to participation in the QCPR. Our policy is that your identifying details, such as your name and address, will never be provided to anyone else.

The online registration process and the database are protected by firewalls so your data is safe.

Research

If you give consent, you may receive notice about research that you are eligible to take part in. These notices will come directly from the QCPR and it will be your choice if you want to contact the researchers. Even if you give consent to receive information about research, your personal details will not be given to a researcher.

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