SETBP1 Society provided a survey to the SETBP1 Community for parents and caregivers to complete starting in April earlier this year. The survey was available in 7 languages including English. Ninety-one surveys were started and 61 were fully completed with 7 mostly completed. The survey was designed to help us better understand how SETBP1-HD and related disorders impact affected children and adults and their families. As our adult population is growing, a separate section was dedicated to learn more about this specific population. The results of this survey are now available in English.