Data collection (continued) At the October Consortium Meeting, STAR Data Manager shared some facts about the 77 Salla patient partners that are part of the STAR family: By age: Great question! A STAR parent noted 7 of the 8 patients at the in person meeting were female and asked are FSASD disorders more common in girls? The response from our clinical partners is - No. The numbers in the literature are even by gender. (Just a coincidence mostly girls were in attendance!) As you can see, our STAR community is international, live across several continents and speak many languages. We’ll do our best to provide content, like this newsletter, in multiple languages whenever possible. You’ll also notice our STAR “children” are not all children! 32% of our known STAR patients are adults (age 18 or older). At the in person meeting, Consortium geneticist Dr Ray Wang shared how important it is for parents of our adult STAR patients to stay engaged. Not enough is known about the trajectory of symptoms over the life of FSASD disease, and contributions from our adult STAR patients may help fill in those gaps. Contributions from every family to STAR data collection efforts are so valued and appreciated! Parent Preference Survey Thank to the 29 STAR families who responded to our July parent preference survey about data collection preferences. 45% of respondents would be willing to update a patient registry every 6 months; 34% said every 3 months. 93% prefer an email reminder when its time to respond to surveys. Topics like developmental milestones, current health issues, quality of life (for both the STAR patient and family) are all important to families to track as well as different therapies, diets and medications tried. Families would like to see data responses by gene variant. In early 2024, we will look to start collecting registry data from all our families, and returning that data back to you so that you can see what others in the community are experiencing. A full copy of the parent preference survey will be emailed back to all parents by the end of November. NOVEMBER 2023 PG 11