June 2026: New Simons Searchlight Data Available to Researchers

Your Participation Is Powering New Research

We’re excited to announce a new Simons Searchlight data release. This data release offers qualified researchers access to expanded participant deidentified data to support studies of rare genetic neurodevelopmental conditions.

Thanks to your contributions, scientists can deepen their understanding, accelerate new discoveries, and advance scientific progress.

What’s Included in the Release

This June 2026 update includes data from 7,502 individuals—up from 6,156 in January 2026—with genetic variants across 136 single gene conditions and 19 copy number variants (CNVs) linked to autism and related neurodevelopmental disorders.

Some highlights available to approved researchers include:

Study-related updates

• Newly available single gene and CNV groups (these groups are added to the dataset when their sample sizes exceed 4 participants): 
  • 2q37 deletion
  • 9q34.3 deletion
  • ACTB
  • JARID2
  • MAOA
  • MEIS2
  • NLGN2
  • PACS2
  • RALGAPB
• New and improved release notes 
  •  Formerly known as the Data Manager Release Notes, the newly redesigned Simons Searchlight Phenotypic Dataset Release Notes and User Guide provides researchers with a more comprehensive, organized, and user-friendly resource for navigating each data release.
  •  Key enhancements include: 
    • A structured Table of Contents for easy navigation
    • A thorough overview of the entire phenotypic data release, including dataset organization, file descriptions, and variable-level guidance. 
    • Expanded documentation addressing common researcher questions and usability challenges, allowing for greater efficiency and confidence while using the data. 
• Newly included data from PedsQL (Pediatric Quality of Life Inventory: Family Impact Module) survey. This survey is designed to measure the impact of pediatric chronic health conditions on parents and the family. 
• Modifications to the Lab Results file to revise and consolidate variables to allow for clearer interpretation. 
• Updates to the Data Dictionary files to include more details about surveys and answer choices and maintain consistency throughout the files. 

🔍 Spotlight: These updates make it easier to follow changes in health and development over time, helping researchers better understand how conditions progress while reducing gaps or confusion in the data.

Participant-related updates

• New data from individuals across many different genetic conditions
• New genetic communities included for the first time, such as 2q37 deletion, 9q34.3 deletion, ACTB, JARID2, MAOA, MEIS2, NLGN2, PACS2, RALGAPB
• Additional datafile containing data from the PedsQL (Pediatric Quality of Life Inventory) survey. 
• Medical, developmental, and behavioral information collected at multiple timepoints

🔍 Spotlight: These updates broaden who is represented in the data and add richer detail, helping researchers learn how genetic conditions can affect individuals and families differently over time.

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.

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