In January 2023, Simons Searchlight released new data for use in research studies. Approved investigators can request the data via SFARI Base.

Some highlights of this data release include:

• Updated summary data files for the Medical History Interview, Previous Diagnosis Interview, and Seizure History Survey
• 836 new Vineland-3 records
• 1,190 new QI-Disability records
• Revised lab results file including variant information and revised variant classifications
• Updated developmental milestone data, including mobility and communication
• Longitudinal seizure survey data, aligned with the Rare Epilepsy Network