New SETBP1 Behaviors and Characteristics Study & Prior SCoReS Study Results

New SETBP1 Behaviors and Characteristics Study

Learn about a new SETBP1 research study! This study will focus on learning more about the unique characteristics and behaviors of our children and young adults with SETBP1 haploinsufficiency disorder and related disorders. The webinar provides information about the study and answers questions from SETBP1 parents. Hear from Kelci Hill and Trina Geye, Phd from Tarleton State University talk about this next phase of the SETBP1 Community Research Study (SCoReS).

Prior SCoReS Study Results

The SCoReS project, a collaboration between Tarleton State University and SETBP1 Society, launched in 2021 and SETBP1 parents and caregivers have completed the first 2 phases. The results from the parent stress levels phase 1 study were presented at the 2022 SETBP1 Family & Research Conference in Baltimore, MD hosted in partnership with Simons Searchlight by Trina Geye, PhD and Stephanie Robertson, PhD from Tarleton State University. More recently Trina Geye, PhD presented a summary of the results from phase 1 and phase 2 Parent Needs Assessment. Check out the first video below. The second video is a slideshow of the results shared for several weeks on our social media platforms of the resutls from phase 2.