10 YEARS OF THE FSR-SARC PATIENT REGISTRY!
FSR is excited to announce the release of The FSR-SARC Patient Registry Report (FSR Registry Report), “Living with Sarcoidosis – Insights from the FSR-SARC Patient Registry (FSR Registry)."
This global, patient-reported outcomes program incorporates dates from 2015-2025. For a decade, the FSR Registry has gathered crucial information from individuals living with sarcoidosis around the world. This online patient registry is helping researchers uncover patterns in the disease and identify ways to improve care and quality of life.
The FSR Registry Report highlights what we’ve learned so far—bringing together data on demographics, clinical characteristics, treatment histories, health outcomes, and quality-of-life measures.*
Who is in the FSR Registry?
- Participants come from diverse backgrounds and experiences.
- The report explores differences in age, gender, race/ethnicity, and more.
We encourage individuals from all racial and ethnic backgrounds to share their experiences so that research, diagnosis, and care strategies reflect the full diversity of the sarcoidosis community.
Since the previous 2019 FSR Registry Report, the FSR Registry has seen a 56% increase in countries represented around the world.
International representation in the FSR Registry includes: Albania, Argentina, Australia, Austria, Bangladesh, Belgium, Belize, Bolivia, Brazil, Bulgaria, Canada, Costa Rica, Croatia, Czech Republic, Denmark, Egypt, Estonia, Finland, France, Germany, Greece, Hong Kong, India, Indonesia, Iran, Ireland, Isle of Man, Israel, Italy, Japan, Latvia, Luxembourg, Macedonia, Malaysia, Micronesia, Montenegro, Nepal, Netherlands, New Zealand, Nigeria, Norway, Pakistan, Philippines, Poland, Portugal, Puerto Rico, Qatar, Romania, Russia, Serbia, Singapore, Slovenia, South Africa, Spain, Sri Lanka, Sweden, Switzerland, Taiwan, Thailand, Turkey, Ukraine, United Arab Emirates, United Kingdom, United States and minor outlying islands, Vietnam.
We couldn’t fit it all in the report! Here are a few other things FSR Registry data has shown us:
Why Your Updates Matter
Individuals with sarcoidosis
Join our mission to advance sarcoidosis research by signing up for the FSR Registry today. We invite you to share this report with anyone you think would be interested in learning more about FSR’s mission and impact.
Clinicians treating patients with sarcoidosis
Invite your patients to help us better understand their lived experience with sarcoidosis by encouraging them to participate in the registry.
Sarcoidosis researchers
The FSR Registry is a powerful recruitment tool as well as a rich resource for patient-reported data on sarcoidosis. Contact the FSR team today to learn about opportunities to collaborate.
Register
By joining the FSR Registry, you may be contacted in the future if research studies for sarcoidosis become available.
Once you enroll, you will take surveys about your experience as a patient with sarcoidosis or as a caregiver of someone with sarcoidosis. You will be able to retake surveys and add new information.
Together, the community that is participating in the FSR Registry has created one of the richest sources of real-world sarcoidosis data in the world. This FSR Registry Report reflects what we’ve accomplished—but it also points to the future. With your continued partnership, we will advance breakthroughs in understanding and treating sarcoidosis.
Contact the FSR Registry team with questions, feedback, or to request use of Registry data at registry@stopsarcoidosis.org
Other Useful Links
*Important Notes About the Data
- The number of participants varies across analyses (not everyone answered every question).
- Data in this report reflects answers given in the Baseline Questionnaire as of March 2025
- Sarcoidosis may change over time—so organ involvement, symptoms, and treatments may look different today than when first reported.