Simons Searchlight February 2026 Update: New Phenotypic Data Available

Two children cuddle on a sofa.
Simons Searchlight powers research to study rare developmental disorders impacting families like the Fruhschiens (pictured here). Simons Searchlight

The Simons Foundation Autism Research Initiative (SFARI) is pleased to announce a new data release from Simons Searchlight aimed at improving the scientific understanding of autism.

The release contains data from 6,100 participants with autism or related neurodevelopmental disorders, including data from 126 individuals with a single gene variant and 19 with a copy number variant (CNV). Approved investigators can request access to this data via SFARI Base.

Some highlights of this release include:

  • A date range for Simons Searchlight v14.0 phenotypic surveys
  • A newly updated Annual Medical History Survey form, which is now integrated into item-level and summary table release files, including new baseline and longitudinal data points
  • Fixing an error in the “most effective medication for seizures” field in the Seizure History Current Medications Summary table
  • Updated surgery summary data in the Medical History Summary table to include a more comprehensive list of surgeries

In addition, 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). See a complete list of the currently available biospecimen data.

You may also access a list of the measures available and the corresponding number of individuals with each genetic disorder for each measure.

The data is available for use by all approved researchers, regardless of SFARI funding. Research projects are not restricted to autism or other neurodevelopmental conditions. There is a six-month embargo on genomic data, but there is no embargo on phenotypic data.

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