Data Sharing


Genetic information is most powerful when it is shared

Sharing your information with a data registry may help to improve the diagnosis and treatment of people who have genetic conditions. When a condition is rare, it can be difficult to find people to participate in trials of new treatments.

Registries like Simons Searchlight make it easier for researchers to get the information they need to advance research on a condition. Your genetic information may also help the development of new therapies and add to our understanding of the condition.


What is a data registry?

A data registry is a collection of medical and demographic information from people who have a specific genetic change or condition.


How can I participate?

The first step is to sign a consent form. Next, you or a family member will complete questionnaires, or surveys, about yourself and/or your child, lifestyle, and family health history.


How is my privacy protected?

All information that can be used to identify you, such as your name, address, or birthday, is removed from any data we share.

The consent form provides information on the rules that our registry follows regarding contact and identification. Please make sure that you understand and are comfortable with the information on the form before providing your consent.

The Simons Searchlight registry follows federal privacy guidelines, including the Health Insurance Portability and Accountability Act of 1996, also called HIPAA, and the Federal Information Security Management Act, also called FISMA.


How will my information be used?

Your information will be shared with approved users, including doctors and researchers, to get a better understanding of the medical, developmental, and behavioral features that are found with specific gene changes.