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.

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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 pregnancy and birth and 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 Research Storage

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.