Research Process
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.
Participation Process
Step 1
Register Online
Create an account for yourself. Data will be stored securely without identifiable information.
Step 2
Consent for Research Participation
Consent to share your information, provide an optional blood sample, and be contacted for future research studies.
Step 3
Add a Child with a Genetic Disorder
If you have a child who has a genetic disorder, add them and complete their consent.
Step 4
Submit a Lab Report
Upload your or your child’s genetics lab report. Our genetics team will review it to make sure you’re in the right place.
Step 5
Share Your Medical History
The Annual Medical History Survey will ask questions about all medical and developmental issues for the person with the genetic condition.
Step 6
Take Online Surveys
Check your Simons Searchlight dashboard for surveys. Stay up to date by reading Simons Searchlight emails and following us on social media!
Step 7
Provide a Sample for Future Research
If interested, your family may participate in a blood draw. Scientists may use these samples to learn more about the genetic disorder.
Step 8
Continue Participating
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.
Download the Research Process steps outlined above as a PDF or PNG.