DATA

New Simons Searchlight Data Now Available to Researchers

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

The Simons Searchlight Team

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 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 from 33 new genetic communities are included in this release (*not new groups but are now grouped together in a common phenotypic folder for easier comparison). This creates new opportunities for insights and discovery.

*2p16.3 deletion and NRXN1 phenotypic data now combined into one group
*16p12.1 deletion and 16p12.2 deletion now merged into 16p12.2 deletion
17p13.3 duplication
17q12 deletion
AFF2
AHDC1
ARHGEF9
ARX
CAPRIN1
CIC
CREBBP
CTCF
DSCAM
EBF3
FBXO11
GRIA2
GRIA3
GRIN2D
HNRNPK
KCNB1
KDM3B
KDM5B
MED12
PHF21A
POGZ
PPP2CA
PPP2R5C
RFX3
RORB
SRCAP
SYNCRIP
TCF7L2
Xp11.22 duplication
Xq28 duplication
ZNF462

Some highlights available to approved researchers include:

Study-Related Updates

Deidentified data linking capabilities using the Clinical Research ID (CRID)
Expanded details on genetic testing methods
Updates in how data is quantified and organized for age at evaluation, behavior and development, medical and previous diagnosis history, potential confounding factors, medications, seizures, and alive or deceased status

Participant-Related Updates

Data from individuals across many genetic conditions
New genetic communities included for the first timeExpanded details on participant demographics and background history (e.g., medical and developmental history)
Medical, developmental, and behavioral data from surveys and interviews
New phenotypic data from somatic mosaic individuals, X-linked carriers, and unaffected family members who participated in Simons VIP/Phase 1 of Simons Searchlight

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