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.
  • Ongoing Opportunity

Sponsor: Simons Searchlight

Duration: Ongoing

Contact: rheilmann@med13l.org


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