NEW STAR FOUNDATION PATIENT REGISTRY HAS LAUNCHED! On May 8th, two dozen STAR families from around the globe joined together via Zoom to officially launch the new STAR Foundation patient registry. STAR is collaborating with an innovative non- STAR families, visit: profit called RARE-X (a program of the rare disease patient https://rare-x.org/salla-research/ advocacy organization Global Genes) to house and maintain our to get started today! data collection program. RARE-X houses registries for over 80 patient communities. This log in page has instructions and FAQ’s in multiple languages. Each STAR family is asked to log in and create an account on the RARE -X platform for you and your child. You’ll then be asked to Need help? complete a set of baseline surveys about your child, which should contact data manager Agnes Jensen take about an hour. at [email protected]. Based on your survey responses, you’ll be asked additional questions (for example if your child has vision problems, you’ll complete a short survey specifically about vision). Families will be asked to update the registry if and when their child’s symptoms change, or at least once per year. HOW DO RESEARCHERS Currently the RARE-X platform is available in English only, but it will be fully translated to Spanish, Portuguese and French later this ACCESS REGISTRY summer. DATA? Researchers around the globe may The launch of a data collection is an important milestone for us and has been a key priority laid out by the STAR Scientific access de-identified registry data Advisory Board - thank you for participating! from both STAR and other patient advocacy organizations (each The data collected will be available to researchers around the individual family provides consent). world (in a de-identified way - each family’s name/identify are Requests are vetted and handled ‘masked’ so your survey answers cannot be tied back to you by RARE-X -- NOT the STAR specifically!) Foundation. Clinicians and researchers The registry is for Salla patients of all ages (child to adult). EVERY family‘s input is valued and appreciated! interested in learning more should go to: https://rare-x.org/researchers/ www.sallaresearch.org Page 2 of 8