New Simons Searchlight Data Now Available to Researchers

Your participation is powering new scientific discoveries! We’re excited to announce a new Simons Searchlight data release. This data release offers qualified researchers access to expanded participant data to support studies of rare genetic neurodevelopmental conditions.

What’s Included in the Release

This latest update includes data from 5,690 individuals—up from 3,843 in 2023—with genetic variants across 123 single gene conditions and 19 copy number variants (CNVs) linked to autism and related neurodevelopmental disorders. Data includes genetic laboratory report data and phenotypic survey data collected through approximately mid-November of 2025.

Some highlights available to approved researchers include:

Study-Related Updates

• De-identified data with linking capabilities using the Clinical Research ID (CRID)
• Clearer information about how genetic testing was done
• Better organized details about age at evaluations, development, behavior, medical history, past diagnoses, medications, seizures, and vital status
• A newly updated Annual Medical History Survey that brings together earlier and follow-up information, with added detail on symptoms, treatments, surgeries, and other medical conditions
• Cleaner, easier-to-use medication and developmental regression data to support more reliable analysis

Participant-Related Updates

• Data from individuals across many different genetic conditions
• New genetic communities included for the first time, such as ANK3, GNB1, MAOA/MAOB, RERE, and YWHAG
• More detailed background and demographic information from participants and families
• Medical, developmental, and behavioral information collected at multiple timepoints
• New data from individuals with mosaic genetic changes, X-linked carriers, and unaffected family members who participated in Simons VIP / Phase 1

How Your Data Helps Researchers

The information you’ve contributed through surveys and blood sample donations is critical for helping scientists:

• Identify trends across conditions
• Understand how these conditions develop and change over time
• Lay the groundwork for better care and future treatments

Who Can Access This Data?

Simons Searchlight data is stored and accessed through SFARI Base – a centralized repository for autism and autism-related research data and biospecimens, providing an online portal to support research recruitment and data access. Qualified researchers who apply through SFARI Base and are approved by SFARI can access Simons Searchlight data. This careful process ensures your information is used responsibly, ethically, and only for research that meets the highest standards. Read the full SFARI announcement.

You’re Making a Difference

Thanks to your continued long-term participation, researchers around the world have access to one of the largest and most detailed datasets of its kind. We’re proud to show how your involvement is actively shaping research.

👉 Want to see how Simons Searchlight data is being used? View current publications