SETBP1 Community Research Study (SCoReS)
Two phases in this SETBP1 haploinsufficiency disorder and SETBP1-related disorder collaborative study launched!! If you or your child have SETBP1-HD or a SETBP1-related disorder, please consider signing up for the SCoReS research project. The Department of Psychological Sciences at Tarleton State University (TSU) has received approval to research the parenting experiences within the SETBP1 Community. This project is a collaboration between TSU and SETBP1 Society. The research project seeks to begin identifying concerns or issues that are unique to the SETBP1 community. As a result of those data, the community will guide the development of subsequent research questions. The goal of the project is identify SETBP1 community needs and provide targeted resources to address those needs.
Who leads the study?
Psychology Department
Lead, Speech & Language Group
Tarleton State University
Psychology Department
Director of the Tarleton Center for Child Well-Being
Tarleton State University
President & Founder of SETBP1 Society
mom to a 10 year old boy with SETBP1 disorder
What is the goal of the study?
- Learn about the unique challenges faced by the parents of children with SETBP1 disorder
- Identify resources to help address the needs of the SETBP1 community
- Conduct and modify the research based off the SETBP1 community’s responses
- Collaborate Together!
The languages supported in addition to English include:
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- The additional supported languages will be dictated by the SETBP1 family participants’ needs.
To join this study, complete the form below. If you have questions, you can send an email to SCoReS@setbp1.org.
View and download the flyer here.
SETBP1 Community Research Study (SCoReS) – Join Study
Provide your contact information below to participate in this study.
Note: A confirmation email with the survey link will arrive in your inbox after you hit Send. You may need to check your Junk Email inbox.