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This tool was developed by participants in the Family Engagement in Research (FER) course in 2024 by Sarah Lee, Kylie Hughes, Nicki Walsh, and Roslyn Melling.
This tool is an infographic with accompanying information sheet outlining the steps needed to setup a research registry connecting family/patient partners with researchers. It includes step by step instructions on stages of registry development and launching and potential considerations for ongoing maintenance. Rare genetic diseases have been used as an example for how this might be done, but it can be adapted to any range of conditions as needed.
The Healthy Trajectories Child and Youth Disability Research Hub acknowledges the Traditional Owners of Country throughout Australia and recognises the continuing connection to the lands and waterways on which we live, learn and work. We pay our respect to Aboriginal and Torres Strait Islander cultures, and to Elders past, present and emerging.
Tell us a bit about yourself so we can keep you up to date with the most relevant news and opportunities.
Tell us a bit about yourself so we can keep you up to date with the most relevant news and opportunities.
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