Data Sharing

Genetic information is most powerful when it is shared.

Sharing your information with a data registry may help improve the diagnosis and clinical care of individuals with 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 with 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 (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 specific information about contact and identification rules for our registry. Please make sure you understand and are comfortable with what is on the consent form before you donate your information.

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


How will my information be used?

Your information will be shared with approved users (clinicians and researchers) to better understand of the medical, developmental, and behavioral features that are found with specific gene changes.