Sarcoidosis Patient Registry by Foundation for Sarcoidosis Research Collecting Patient Reports and Health Records for Research and Support

What this Trial Is About

This research aims to collect long-term patient-reported information from people living with sarcoidosis while ensuring privacy. The study focuses on gathering data about demographics, symptoms, diagnosis experiences, healthcare providers, treatments, and the overall impact of the disease. It also supports research by creating a natural history of sarcoidosis and understanding the communitys needs. Participants begin by reviewing an information document and providing consent or assent if they are minors aged 7 to 18. They create an online account and complete a baseline survey about their health and disease experience. Personal information is kept secure and separate from private health data, with only de-identified information shared for research. Participants receive annual contact to update health information and may opt to hear about new studies. During the study, participants provide data through surveys and may link their electronic health records. The main outcome is completing the baseline survey, with follow-ups to ensure data completeness. Participation is voluntary, and participants can skip questions or stop at any time. The study spans multiple years, continuing to gather updates to advance understanding of sarcoidosis.

Foundation for Sarcoidosis Research Advanced Cures Registry (FSR-SARC Registry)