Join Simons Searchlight
Empowering Families, Advancing Research on STXBP1
Simons Searchlight is an online international research program funded by the Simons Foundation Autism Research Initiative (SFARI). Their primary focus is collecting natural history registry data from families with specific genetic changes associated with neurodevelopmental disorders, including autism, seizures, developmental delays, ADHD, and more. Their online platform offers a secure space for families worldwide to share insights on genetics, development, medical history, behavior, communication, and motor skills.
What Simons Searchlight Collects
Long-Term Surveys: Share details of medical history and behaviors for a comprehensive view of your experiences and to better understand how STXBP1 evolves over time.
Optional Blood Samples: Donated blood is used to make research resources, including cell lines, DNA samples, and induced pluripotent stem cells or iPSC. Choosing not to provide a sample won’t affect other aspects of research Participation.
Learn more about Simons Searchlight Data and Biosample Collection here.
Quarterly Report
Simons Searchlight produces a quarterly STXBP1 report from data collected.
Why We Partners with Simons Searchlight for Research Data Collection
Expert Support: Access genetic counselors for guidance and result explanations
Participant Focus: Research prioritizes your needs and important questions
Appreciation: Receive digital gift cards as thanks
Global Access: Join from anywhere in multiple languages
Global Researchers: Simons Searchlight shares de-identified data with qualified researchers for IRB-approved projects
Direct Assistance: Staff are always available to answer your research questions at Coordinator@SimonsSearchlight.org
How To Register
Visit the Simons Searchlight Account Set-up page
Watch the tutorial video that outlines the registration process
Complete the consent forms online through the registration portal - here is a copy of the form for your reference
