Did you know that CureGRIN is partnered with Simons Searchlight to help advance research on GRI Disorders? Since 2010, Simons Searchlight has been our trusted research partner focused on understanding rare genetic neurodevelopmental disorders, including autism, seizures, and developmental delays, by collecting valuable data from families like yours.
Why Participate in Simons Searchlight?
- Comprehensive Data & Blood Sample Collection: Through online surveys (e.g. Annual Medical History, Vineland, Seizure History, Child Behavior Checklist, etc.) and optional blood samples, Simons Searchlight gathers crucial information on genetics, development, behavior, and more. Donated blood is used to make research resources, including cell lines, DNA samples, and selected induced pluripotent stem cells or iPSCs. This combined data forms a powerful toolkit for researchers.
- Expert Support: Participants have access to Simons Searchlight genetic counselors and study coordinators who provide support and explain results.
- Global Impact: Your de-identified data helps researchers worldwide, accelerating discoveries and improving understanding of GRI-related conditions.
- Sharing Data Insights: Simons Searchlight shares new summarized data findings with families and researchers through presentations, reports, and publications.
Ready to Make an Impact?
Your participation is a vital piece of long-term research that can drive future breakthroughs and benefit families for generations to come. Here is how you can get involved today:
- Step 1: Learn the Steps
- Curious about how it all works? Review the Research Participation Process to see what to expect.
- Step 2: See Why It Matters
- Watch this quick breakdown on how your yearly updates change the game: Understanding the Importance of Sharing your Annual Medical History
- Step 3: Join the Study
- Ready to jump in? Register/Login to Participate in Simons Searchlight
Have Questions? Reach out directly to the Simons Searchlight Study Coordinators at Coordinator@SimonsSearchlight.org or visit simonssearchlight.org to learn more.
