Help Advance Research with the Annual Medical History Survey

That’s why Simons Searchlight is excited to introduce an updated Annual Medical History Survey (AMHS)—making it easier than ever for participants to share their health updates and contribute to research.

Key Updated AMHS Overview and Highlights

The updated Annual Medical History Survey (AMHS) is a streamlined, yearly survey designed to make long-term participation easier and more impactful. The AMHS is now more comprehensive for all participants, covering more conditions, symptom severity, and treatment effectiveness.

If individuals have completed it online before, they can now preview past answers—making it simple to update and build on previous responses. This enhancement saves time while ensuring researchers receive high-quality data. The AMHS is currently available only in English, but additional languages will be available soon for non-English-speaking participants.

Why is Medical History Important to the Simons Searchlight Research Program?

A person’s medical history helps researchers understand how a rare genetic condition appears, progresses, and varies over time. By sharing your family’s medical history, you contribute to a deeper understanding of the condition’s long-term impact.

Why Your Participation Matters

By completing the AMHS, you:

✔ Provide researchers with key insights into how medical conditions change over time
✔ Help improve care and shape future treatments for your genetic community
✔ Earn gift card rewards as a thank-you for your contribution

If the AMHS is assigned to you, visit your participant dashboard and complete the survey today:

👉 Complete the AMHS

Your participation is invaluable in advancing research and supporting families worldwide. Thank you for being part of Simons Searchlight!