Privacy highlights

Autoimmune Registry is a patient-powered research platform dedicated to advancing understanding of autoimmune diseases through structured, longitudinal data collection and patient engagement. We collect demographics and health-related information in order to better understand the complexity of autoimmune diseases. Our goal is to use data to guide research and to connect patients to studies. We do not share any personal information without your explicit consent.

• Data Sharing: We share anonymized, aggregate data with researchers, patients, other advocacy groups, and the general public. 

• Vendors: We use trusted, GDPR-compliant third-party processors in the United States for survey hosting and email outreach.

• Data Retention: Because we use data for research and statistical purposes, there is no definite end date for achieving our goals. We store your data in secure vendor sites until you request deletion or if the project is terminated.

• Your Rights: You have the right to access your data, request corrections, or request the deletion of your data at any time by emailing privacy@autoimmuneregistry.org.

For more details, please read our full Privacy Policy.