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?
How can I participate?
How is my privacy protected?
How will my information be used?