Contacts for Neurodevelopmental Research (CoNR)

Information Statement

Dear Parent,

We would like you to consider allowing us to send you information in the future about new research projects in neurodevelopmental disorders that may be suitable for your child. The information we send will give you full details about the project. It is your choice whether you agree to take part or let your child take part in any future project or not.

If you are interested in receiving information about future research projects, we will ask you to fill in a form with your contact information, your child’s name and your child’s diagnosis if available.

We will then put this information on a list of families that are interested in being contacted in the future. We will keep this information indefinitely.

We do not expect there to be any direct benefit to you or your child. Benefits will vary from study to study. Each study will discuss the potential benefits and risks that you and your child will be exposed to in that individual study. We hope that research into neurodevelopmental disabilities and disorders will able to be done more quickly in the future if we already have a list of families who might be eligible, and interested, in participating in research.

The information that you give us about your child will be treated as confidential. We can disclose the information only with your permission, except as required by law. If we hear about a research project that your child may may be suitable for, we will contact you on behalf of the research team. You will then be able to respond directly to that research team if you are interested in learning more about that project.

All information will be stored securely by Murdoch Childrens Research Institute, part of the Melbourne Children's Campus which includes The Royal Children's Hospital Melbourne (RCH) and the Department of Paediatrics, University of Melbourne.

The following people may access information collected as part of this research project.

1. The research team invovled with this project

2. The RCH Human Research Ethics Committee

In accordance with relevant Australian and/or Victorian privacy and other relevant laws, you have the right to access and correct the information we collect and store about your child. Please contact us if you would like to access the information, or if you would like to withdraw the information.

Participation in this project is voluntary. Your child does not have to take part if you do not want them to. Your child can withdraw from the project at any time, without giving a reason. We will not use any of your child’s information if they withdraw. If your child does not take part, or withdraws, it will not affect access to the best available treatment options and care from the RCH.

You can remove your contact details and information from the list at any time in the future by contacting us with the details at the end of this Information Statement. If we contact you in the future about a research project and you then decide that you don’t want to be contacted again in the future, you can withdraw your contact details at that time.

Yours sincerely,

If you have any concerns and/or complaints about the project, the way it is being conducted or your child’s rights as a research participant, and would like to speak to someone independent of the project, please contact:

Director, Research Ethics & Governance, The Royal Children’s Hospital Melbourne on telephone: (03) 9345 5044.

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