Research Process
Join the Simons Searchlight Research Program
To participate in Simons Searchlight, you must:
- Have a confirmed genetic diagnosis from our list of eligible genetic conditions.
- Have a copy of your or your child’s or dependent’s genetic lab report.
- Be able to participate in one of the following languages – English, Dutch, French, German, Italian, Portuguese, or Spanish.
If you meet these three criteria, you’re eligible to enroll in our research study as a participant and can share information through online research surveys and donate 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.
Participation Process
Step 1
Register Online
Create an account for yourself. Data will be stored securely without identifiable information. Read more about our commitment to data security.
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 Child with Genetic Disorder and Other Biological Parent
If you have a child who has a genetic disorder, add them and complete their consent. You can also invite the other biological parent to join.
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.