This summer marked the one-year anniversary of the new platform for the FSR-SARC Patient Registry (FSR Registry) – a major milestone made possible by the incredible contributions of our patient community, researchers, and partners. The new platform (hosted on Across Healthcare) aimed to increase ease of use and offer new ways to return learnings to the sarcoidosis community
Since the launch of the new platform, the FSR Registry has continued to grow and evolve, strengthening its role as a critical resource for advancing sarcoidosis research:
- Over 1,300 new participants
- Over 1,600 completed surveys providing valuable patient-reported data
- Ten abstracts/posters utilizing registry data were presented at scientific in 2025 and 2026
- 13 clinical research opportunities targeted for those most likely eligible to participate
- A new survey to understand the challenges faced by veterans with sarcoidosis was launched
- FSR published a report using 10 years of FSR Registry data to highlight what we’re learning and the impact on research
“A real strength of the FSR Patient Registry is that it amplifies the voice of the sarcoidosis community in research. Patient participation has highlighted the burden of invisible symptoms of fatigue and pain, the severe side effects of treatment, and the extent to which barriers such as insurance and employment affect sarcoidosis care. Learning such as these supported a patient co-designed trial testing a new mindfulness program to address sarcoidosis fatigue. The Registry allows patients’ experiences to drive not only the questions we ask, but the solutions we test.” – Logan Harper, MD, Assistant Professor of Medicine, Cleveland Clinic (FSR-SARC Patient Registry Co-Chair, FSR-Global Sarcoidosis Clinic Alliance Founding Member)
“Knowledge is power. The more information we have about patients, their symptoms and experiences, the better treatment clinicians and providers can supply.” – FSR Registry Participant
“For rare diseases like sarcoidosis, patient registries are essential. We need large numbers of people to answer tough questions — and the FSR Patient Registry brings those voices together in one place.” – Jodie Roberts MD, MSc, FRCPC, Assistant Professor, University of Calgary.
“It is very important to advance the knowledge of sarcoidosis, a rare disease of no known cause. If patients share their experience, it might help the scientific and medical community, as well as policy makers, to find cures and support for patients. I want to do what I can to help research on sarcoidosis.” – FSR Registry Participant
Click here to log in, create your account, or learn more about the FSR Registry
Turning FSR Registry Data into Research
The FSR Registry is helping transform patient experiences and real-world data into research that can be shared with the scientific and clinical community. . There are currently several more conference abstracts and publications in progress this year that use FSR Registry data.
These projects have explored important topics such as multi-organ involvement, cutaneous sarcoidosis, quality of life, burden of pain, and neurosarcoidosis. Each poster and abstract represents an opportunity to elevate the patient voice, identify gaps in care, and generate questions for future sarcoidosis research.
Visit our website to read the abstracts and posters that use FSR Registry data: Registry Data in Action.
Expanding Knowledge Through Data
This year also marks continued progress in integrating and analyzing electronic medical record (EMR) data. Participants in the United States can choose to connect their EMR data through their health system’s online portal. Connecting your EMR is completely optional.
FSR Registry users have already linked records from 60 institutions. We encourage users to connect their EMR because it can add valuable clinical information alongside the experiences you share through FSR Registry surveys.
Earlier this year, we launched a Veterans Survey to better understand the experiences of those who have served in the U.S. military armed forces. This effort will help us explore potential environmental and service-related exposures, diagnostic patterns, and care needs unique to the Veteran community – an important step towards more inclusive and representative sarcoidosis research. So far, over 60 Veterans have taken this survey!
Additionally, our
Understanding and Expanding the FSR Registry Community
The figures below show data from the
The FSR Registry is growing but still does not fully reflect the diversity of the sarcoidosis community. To ensure future research is relevant, equitable, and responsive to everyone affected by sarcoidosis, we need broader participation across racial and ethnic backgrounds, ages, genders, geographic regions, and lived experiences .
To learn more about how FSR is addressing racial health disparities by increasing representation of Black sarcoidosis patients in clinical trials, visit Ignore No More: ACTe Now! Campaign — Foundation for Sarcoidosis Research
If you have not yet joined the FSR Registry or consented to the new platform, we invite you to enroll and share your story.
If you have joined us on the new platform, we thank you for your ongoing participation. Please consider encouraging others in your community – including family members, support-group peers, and fellow patients – to take part. We also encourage you to continue your participation by taking the annual surveys so that your story can remain up to date.
Your Voice Can Shape Sarcoidosis Research
Joining the FSR Registry is one of the most important things you can do to share your voice and volunteer for the sarcoidosis community. Your experiences – captured through surveys and, if you choose, your EMR data – help researchers see the full picture of how sarcoidosis affects people in real life.
The FSR Registry is also one of the easiest pathways to sarcoidosis research participation. Based on your survey responses, you may be identified as eligible for qualifying research studies, giving you the opportunity to take part in projects that could lead to better treatments and, ultimately, a cure.