Review the study brochure to learn more about Simons Searchlight research and follow the steps below to enroll.
*Simons Searchlight is also available in languages other than English. If you are a non-English speaking participant, learn more about how to participate in the research program.
Create an account for yourself. Data will be stored securely without identifiable information.
Consent to share your information, provide an optional blood sample, and be contacted for future research studies.
If you have a child who has a genetic disorder, add them and complete their consent.
Upload your or your child’s genetics lab report. Our genetics team will review it to make sure you’re in the right place.
Share Your Medical History
The Annual Medical History Survey will ask questions about pregnancy and birth and all medical and developmental issues for the person with the genetic condition.
Check your Simons Searchlight dashboard for surveys. Stay up to date by reading Simons Searchlight emails and following us on social media!
If interested, your family may participate in a blood draw. Scientists may use these samples to learn more about the genetic disorder.
We add surveys to the study regularly, and some surveys are repeated every year, along with a follow-up medical history survey. We all learn more by tracking changes over time.