Simons Searchlight 2025: A Year in Review

In 2025, the Simons Searchlight community continued to grow, connect, and drive meaningful research forward. Thanks to the dedication of families, advocates, and researchers around the world, this year brought new participation, deeper data, and real scientific impact.

2025 by the numbers:

• Registered 1,930 participants with genetic variants
• Completed 2,750 medical history surveys
• Completed 15,315 additional research surveys
• Generated 279 quarterly reports across 73 genetic communities
• Enabled 26 peer-reviewed publications using Simons Searchlight data
• Received 198 researcher requests for data and biospecimens
• Collected 288 blood samples for research
• Reviewed 1,250 genetic testing reports
• Created 58 evidence-based genetic condition guides
• Registered 470 non-English-speaking participants
• Answered more than 9,500 participant emails
• Received a record 250 Community Advisory Committee applications
• Attended 54 in-person and virtual conferences
• Published 250 social media posts sharing research and resources

We’re deeply grateful to every family, researcher, and partner who made this progress possible. Continued participation year over year helps create powerful, long-term data that captures milestones and change, informs clinical care, and lays the groundwork for future treatments. We’re excited to keep moving forward together in 2026.