Complete Your Yearly Medical History Update Online

Simons Searchlight has some exciting news—your Yearly Medical History Update survey can now be done entirely online!

Some of you may have completed your medical history update as a yearly phone call with genetic counselors. Starting in October, we will be moving all of our annual follow-ups to a new online medical history survey. We hope that this will be more convenient for your schedule and enable more families to contribute medical information to Simons Searchlight.

Why is Medical History important to the Simons Searchlight research study?

A person’s medical history contains information that is important for understanding the natural history of a rare disease and how it changes over time. This is why we make it easy for all families to contribute medical history information through a hybrid of online and telephone surveys.

What are the benefits of completing the Yearly Medical History Update online?

• You can share updates without needing to schedule a call or worry about time zones.
• You can take breaks and come back to finish the survey later.

How and when do you complete your Yearly Medical History Update?

• Participants with a genetic disorder will receive a reminder by email every year around their birthday to log in to their Simons Searchlight account and select the Yearly Medical History Update task on their dashboard.

What if you have further questions?

We invite you to review the Medical History section on our FAQs webpage for additional information.

If you have any questions, comments, or need assistance while filling out your survey, you can  contact our team at coordinator@simonssearchlight.org or by phone at 855-329-5638.