announcement

Participation is now available in German, Italian, and Portuguese! Learn more

Research Process

 

Join the Simons Searchlight Research Program

To participate fully in Simons Searchlight, individuals must:

  • Have a confirmed genetic diagnosis from our list of eligible genetic conditions
  • Be able to participate in one of the following languages: Dutch, English, French, German, Italian, Portuguese, or Spanish
  • Have a copy of your or your child’s genetics lab report

If you meet these criteria, you’re eligible to fully take part in our research study as an enrolled participant and can share information through online research surveys and an optional blood sample. Please keep reading to learn about the participation steps and how your involvement can help advance scientific understanding.

Additionally, review the study brochure to get a detailed overview of Simons Searchlight and how we support families and researchers.

*Simons Searchlight is available in multiple languages: If you speak a language other than English, click here to learn more about how you can participate in your preferred language.

divider Simons Searchlight

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.