Foundation for Sarcoidosis Research Announces 13 Inaugural Sites for Groundbreaking FSR Clinical Data Registry
CHICAGO, July 14, 2026 (GLOBE NEWSWIRE) -- The Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to finding a cure for sarcoidosis and improving care for those affected, today announced the selection of 13 inaugural clinical centers as data gathering sites in the groundbreaking national FSR Clinical Data Registry. Powered by the FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA), the FSR Clinical Data Registry will serve as a pivotal resource for the research community by supporting high-quality, standardized data collection across a network of expert sarcoidosis centers.
This announcement is a key milestone for the registry's development. To ensure that this registry gathers information most useful to advancing sarcoidosis research and improved patient outcomes, FSR spent the last two years seeking feedback and engagement from patients, caregivers, doctors, coordinators, and pharmaceutical partners. Through the collective insights of expert-based working groups, FSR has built a unique protocol and data collection strategy aimed at improving our understanding of the multi-disciplinary nature of sarcoidosis.
This longitudinal, multi-center approach is designed to ensure geographic, ethnic, and environmental diversity aimed at strengthening the broader sarcoidosis research ecosystem, creating a powerful comparative data set, and generating unique data and insights which will empower the field to improve diagnosis and screening, improve patient care, discover biomarkers, assess the impact of therapies on patient outcomes, and create new opportunities for scientific discovery and collaboration. Sites were selected based on multi-disciplinary clinical representation and expertise, strong characterization and access to diverse or unique patient populations and demonstrated institutional commitment to the project and the field. The sites selected through this highly competitive process are as follows (pending contracting):
- Brigham and Women’s Hospital
- Cedars-Sinai Medical Center
- Duke University
- Medical University of South Carolina
- Hospital for Special Surgery
- National Jewish Health
- NYU Grossman School of Medicine
- The Ohio State University
- Stanford University
- University of Minnesota
- University of Virginia
- UT Southwestern
- Yale University
“We are thrilled to partner with these 13 extraordinary institutions in launching the national FSR Clinical Data Registry,” said Mary McGowan, President and CEO of FSR. “Sarcoidosis has remained a mystery for over 150 years. We can longer wait for progress; we must aggressively and actively generate tools and strategies to lay the groundwork for acceleration of research, clinical care, therapy development and patient outcomes. FSR is proud to pioneer this groundbreaking research effort to build the most comprehensive multi-disciplinary, multi-institute data set in sarcoidosis ever created. Through this collective effort, we are certain that the next 5-7 years will yield some of the most important discoveries for the field of sarcoidosis and beyond.”
“The FSR Clinical Data Registry is a long-awaited opportunity to bring a large-scale multi-center study to this rare devastating disease to help us better understand its presentations, manifestations and outcomes across the US,” says Steering Committee Co-Chair Dr. Lisa Maier from National Jewish Health. “Other rare lung diseases have benefited from having similar studies to help advance the understanding of the natural history of disease, and ultimately how treatments could help prevent impairment – with this new study, we will now be able to use this registry to advance understanding and interventions to address this severe systemic disease.”
Dr. Mridu Gulati, Steering Committee Co-Chair from Yale University added, “Every sarcoidosis patient has a unique journey. The FSR multicenter Clinical Data Registry provides a critical opportunity to capture these individual’s stories and transform them into data that will inform more effective management and treatment decisions, ultimately improving the well-being of current and future sarcoidosis communities.”
In the coming months, FSR will finalize formal agreements, conduct onboarding and training, and launch phased implementation of data collection to ensure high-quality, consistent enrollment and follow-up.
"The FSR Clinical Data Registry is one of the most important collaborative initiatives in sarcoidosis research today,” say Dr. Matthew Baker and Dr. Lakshmi Jayaram from Stanford University. “We are proud that Stanford was selected to participate and look forward to contributing our multidisciplinary expertise and patient population to a resource that will help answer critical questions about disease manifestations, treatment outcomes, and long-term prognosis. Together, we will build the evidence base needed to improve the lives of patients with sarcoidosis."
“The University of Texas Southwestern Medical Center is proud to be part of the FSR Clinical Data Registry that connects diverse institutions to advance sarcoidosis management and improve patient outcomes”, says Dr. Connie Hsia from UT Southwestern. “By integrating our clinical data into this powerful registry, we can collaborate globally to deepen our understanding of this complex disease and deliver enhanced, personalized care to the community. We are deeply committed to the mission of optimizing the health span for everyone living with sarcoidosis.”
The FSR Clinical Data Registry will complement and build on FSR’s existing initiatives, including the FSR-SARC Patient Registry, which captures patient-reported outcomes and lived experience data from individuals living with sarcoidosis worldwide. Together, these resources will enable a more complete picture of the sarcoidosis journey, from diagnosis and treatment to long-term outcomes, supporting research that is both scientifically rigorous and deeply grounded in patient needs.
About the Foundation for Sarcoidosis Research (FSR)
Established in 2000, the Foundation for Sarcoidosis Research (FSR), is the leading international non-profit organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients through research, education, and support. Since inception, FSR has fostered over $10 million in sarcoidosis-specific research efforts and has worked diligently to provide resources to thousands. For more information and to join our community, visit www.stopsarcoidosis.org.
About the FSR Global Sarcoidosis Clinic Alliance
The FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) is member program consisting of 50 clinics around the world which launched in 2022 and consists of clinics, hospitals, individual providers, patients, and caregivers committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis. The FSR-GSCA hosts clinical education and engagement opportunities for clinicians interested in expanding their knowledge and understanding of sarcoidosis and provides direct patient support and outreach at a local level in partnership with leading interdisciplinary sarcoidosis clinics around the world.
Media Contact:
Tricha Shivas, MBe
Chief of Staff and Strategy
Foundation for Sarcoidosis Research
T: 312-341-0500
C: 973-945-3573
E: tricha@stopsarcoidosis.org
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