PATIENT REGISTRY UPDATE Thank you to the families around the world that have already signed up with and are participating in the STAR Patient Registry, hosted on the Rare-X platform. The registry is for Salla patients of all ages (child to adult). EVERY family‘s input is valued and appreciated! Each STAR family is asked to log in and create an account on the RARE -X platform for you and your Salla patient. You’ll then be asked to complete a set of baseline surveys about your them, which should take about an hour. Based on your survey responses, you’ll be asked additional questions (for example if your Salla patient has vision problems, you’ll complete a short survey specifically about vision). Families will be asked to update the registry if and when their Salla patient’s symptoms change, or at least once per year. Currently RARE-X is available in English only; translation to Spanish, French and Portuguese has been delayed, but should be available in 2025. However, STAR provides translation services available to help if needed. As we learned in the FSASD Consortium update (see page 3), pre-clinical trials in animal and cell This Edition models are coming soon. The patient registry provides researchers important data about our Salla community as we move towards potential clinical trials in people. The data collected is ‘masked’ so that each family’s name/identify cannot be tied back to you specifically! STAR families, visit: HOW DO RESEARCHERS ACCESS REGISTRY DATA? https://rare-x.org/salla- Researchers around the globe may research/ access de-identified registry data from to get started today! both STAR and other patient advocacy organizations (each individual family This log in page has instructions and FAQ’s in provides consent). multiple languages. Requests are vetted and handled by RARE-X -- NOT the STAR Foundation. Need help? Clinicians and researchers interested Contact STAR project manager in learning more Agnes Jensen at [email protected] should go to: for individual assistance with getting started or https://rare-x.org/researchers/ to answer any questions! Page 7 of 8 www.sallaresearch.org