Research process

Review the study brochure to learn more about Simons Searchlight research and follow the steps below to enroll.

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

Complete a Medical History Phone Call

Schedule your medical history phone call with our genetic counselor. During the call you’ll be asked about medical and family history that we will track over time.

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 phone call. We all learn more by tracking changes over time.