Patient community led collaborative study with Tarleton State University initiated to identify needs and provide resources for the SETBP1 community

Austin, TX — September 20, 2021 — The Department of Psychological Sciences at Tarleton State University (TSU) and the SETBP1 Society have launched a patient community collaboration study called the SETBP1 Community Research Study (SCoReS). This partnership was created to identify the needs of caregivers within the SETBP1 community and efficiently provide targeted resources to address them.

As a community-based participatory research (CBPR) study, SCoReS will gather input from families who have experienced the unique challenges of SETBP1 haploinsufficiency disorder and will then summarize findings to provide a starting point for isolating family needs as well as guiding the next phase of the study. The long-term goal of the study is to provide a library of accessible information to the caregivers but also to educators, medical professionals, and researchers, guiding their efforts to positively impact the future of care for those living with SETBP1 haploinsufficiency and related disorders.

Haley Oyler, president and founder of SETBP1 Society and Trina Geye, assistant professor at Tarleton State University and board member for SETBP1 Society are both actively involved in the SETBP1 community and are co-principal investigators for the study.

“The ability to clearly identify needs in the community will benefit them directly by providing resources but an indirect benefit will be giving the SETBP1 community a voice in the future direction of research”, said Trina Geye. The findings of the first phase of the SCoReS study are expected to be finalized by the end of 2021 with phase two beginning in 2022.

“This research project is uniquely positioned to directly help the community because their input and participation are driving the direction of the study with the intention of growing it for several years. As a parent of a child with a rare neurodevelopmental disorder, specifically SETBP1 haploinsufficiency disorder, I understand how difficult it is to know how to best help my child based on his unique challenges. The hope for this study is to provide families, like ours, meaningful guides and resources to better help caregivers provide for and guide our children with SETBP1 haploinsufficiency disorder and related-disorders.” said Haley Oyler.

About SETBP Society: SETBP1 Society is an internationally focused volunteer 501(c)(3) organization based in the US with a mission to provide support to individuals with SETBP1 disorder and their families, to promote discussion and fund research, and to bring awareness and education to the public.

For more information about the SETBP1 Society: https://www.setbp1.org

Additional information about the SETBP1 Community Research Study: https://www.setbp1.org/scores/

For more information, press only:

Kelsey Bennett
402-619-8695
info@setbp1.org