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What being part of the register involves

To enable us to collect important information about the number of children born in Australia with various hand or arm differences, the AHDR will include a minimum data set of information about the hand / arm difference of all children notified to the AHDR; however, no information that could identify you / your child will be recorded unless you give your consent for you /  your child to be part of the AHDR. 

We would like to collect health and related information about you / your child from a number of different sources. Each of these sources is explained below. We would like you to consider giving your permission for each of these, however it is your choice which you agree to. You may decide to agree to some or all of them. 

Optional enrolment questionnaire 

We would like you to fill in a one-off questionnaire. Ideally, this is filled in by the child’s mother as it includes questions about pregnancy and birth. It also includes questions about family background and child health. The questionnaire takes about 30 minutes to do and can be done online, on printed copy, or by phone interview, whichever you prefer.

Optional access to hospital medical records

We would like to collect and use information from your / your child’s hospital medical record. The information we would collect includes: diagnosis, functioning, treatment, and outcome of treatment. 

Optional future research

We would like you to consider letting us send you information about new research projects that may be suitable for you / your child. Any information we send will give you the full details about the project. It is your choice whether you agree to take part / let your child take part in any future project. You are not obliged to take part in any future research you are sent information about.

Optional outcome questionnaires

We would like to send you a series of short questionnaires for you or your child to complete when your child is age 5, 8, 11, 14 and 17 years. The questionnaires will allow us to assess how your child views their hand difference and how it affects their function and behaviour, if at all. This information may help us determine how to best manage hand differences like that of your child’s. It is your choice whether your child completes some, all, or none of the questionnaires. You can read a little bit more about them here