Research

Review the study brochure to learn more about Simons Searchlight research and follow the steps below to be fully enrolled.
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Participation Process

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Step 1

Register Online

Create an account for yourself. Data will be stored securely without identifiable information.

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Step 2

Complete Consent

Consent to share your data, provide an optional research sample, and be contacted for future research studies.

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Step 3

Add a Child with a Genetic Change

If you have a child who has the genetic change, add them and complete their consent.

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Step 4

Submit a Lab Report

Upload your or your child’s genetic lab report. We’ll review it to make sure you’re in the right place.

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Step 5

Complete Medical History Phone Call

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

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Step 6

Take Online Surveys

Check your dashboard for surveys. Follow us on social media for study updates and helpful information!

Step 7

Provide a Sample for Research Storage

If interested your family may participate in a blood draw or saliva collection. Researchers may use these samples to learn more about the genetic change.

Step 8

Continue Participating

We add surveys to the study as needed, and some surveys are repeated every year, along with a follow-up medical history phone call. The study team tracks updates over time.