The Foundation for Sarcoidosis Research announced they are entering their second year with FSR Sarcoidosis Patient Registry. The FSR Sarcoidosis Patient Registry was established in collaboration with National Institutes of Health (NIH) to provide critical data for doctors and researchers. The registry fills an imperative need that will advance research.
The registry is an online system for collecting information from hundreds of thousands of patients and providing this to researchers so they can identify patterns, similarities and differences, and ongoing health information. The system makes each patient anonymous, and aggregates the information into reports.
The registry is in itself a global “clinical trial” that patients can do right from their living room, helping researchers find answers. To make sure that patient identity is fully protected, we have partnered with a HIPAA-compliant hosting facility to make sure patients’ information is de-identified (anonymous) and completely secure.
The FSR website has a series of how-to videos to walk patients through registering step-by-step and answer questions along the way. Now is your time to join the fight against this disease by directly contributing to research!