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.