New Annual Medical History Survey

The Simons Searchlight team is always trying to make it easier for people to participate in research. That’s why we’ve made a change to how we collect your medical history information. Sharing your family’s medical history is important for researchers to understand the genetic condition and track changes over time.

New participants can now share this information by completing our Annual Medical History Survey. If you speak English, you can use the form right now. But don’t worry, we will have versions in Spanish, French, and Dutch later this year. The survey is only for those with the genetic condition.

If you have shared your medical history in the past, you will continue to update it through the Annual Medical History Survey.

What are the benefits of completing these surveys online? 

  • You can share updates without needing to schedule a call or worry about time zones.
  • You can take the survey at your own pace without feeling rushed.
  • You can take breaks and come back to finish the survey later. 
  • We hope this online form encourages participants to share their medical history more easily and at their own convenience.
  • After you complete your medical history survey, you will receive an Amazon gift card that will be available in the Rewards section on your participant dashboard.

I shared my medical history, what’s next?

  • The information is shared with researchers in the medical community at no cost, so that they can learn about the natural history and clinical needs of your genetic condition.
  • We share all of your genetic community’s information back with community members through summaries and presentations.
  • The answers you provide are private, and any information that could identify you is removed.
  • Your responses will be reviewed by a genetic counselor, and you will be contacted with any questions. If you have any issues with the survey, you will be able to request to speak with a genetic counselor.
  • We will contact you every year to update your information.

If you experience any issues with the online form or need additional support, you can still request a phone interview with one of our genetic counselors. You can send questions to

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