What is it?

Simons Searchlight is also a 501(c)(3) nonprofit established to study roughly 175 genes. Initially, this research study was focused on genes that contribute to autism. It has expanded to include broader neurodevelopmental genetic disorders. This is a caregiver/patient-entered long-term Natural History research study.

Why should you participate?

• Long time partner of The MED13L Foundation with researchers who have collected specific information from the community.
• Phone interview for medical history.
• Surveys focused on behavioral, developmental, seizures, communication and other neurological contributors – typically done annually.
• Optional blood sample donations for the Simons Searchlight repository.
• Select survey results analyzed on quarterly basis. Available here.
• Languages for study participation include English, Spanish, French and Dutch.
• Data and iPSC samples available to researchers only via request through SFARI base.