Simons Searchlight July 2026 Update: New Autism Phenotypic Data Available

A photo of Joe Henry and his son, Franklin Henry, walking outside. — In 2021, genetic testing provided through Simons Searchlight gave the Henry family answers for Franklin (pictured right, with his father Joe), identifying a variant in his *NR4A2* gene linked to autism and a rare neurodevelopmental condition. Courtesy of the Henry Family

Simons Searchlight, a program of the Simons Foundation Autism Research Initiative (SFARI), announces the release of new de-identified participant data available to qualified researchers. This release includes data from more than 7,500 individuals, including 136 single-gene variants and 19 copy-number variants (CNVs) associated with autism and related neurodevelopmental disorders.

The latest release features Simons Searchlight Phenotypic Dataset Release Notes, a redesigned version of the Data Manager Release Notes that accompanied previous releases. These notes feature several improvements:

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; and
Expanded documentation addressing common researcher questions and usability challenges, allowing for greater efficiency and confidence while using the data.

Other highlights of this release include:

Newly available data for seven single-gene and two CNV groups;
Newly included data from the PedsQL (Pediatric Quality of Life Inventory: Family Impact Module) survey, which 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; and
Updates to the Data Dictionary files to include more details about surveys and answer choices and to maintain consistency throughout the files.

Additionally, biospecimens are available from participants who have contributed blood samples. Biospecimens include cell lines (fibroblasts, lymphoblastoids and induced pluripotent stem cells) and DNA (derived from saliva, lymphoblastoids or whole blood). A complete list of currently available biospecimen data can be found here.

Approved investigators can request access to these data via SFARI Base. See a complete list of the measures available and the corresponding number of individuals with each genetic disorder for each measure.

The data are available to all approved researchers, regardless of SFARI funding. Research projects are not restricted to autism or other neurodevelopmental conditions.