Foundation for Sarcoidosis Research Launches Groundbreaking Clinical Data Registry Across 13 Leading US Institutions
核心洞察
The Foundation for Sarcoidosis Research (搜索) (FSR) announced 13 inaugural clinical sites for its national FSR Clinical Data Registry, including Brigham and Women's Hospital, Stanford, Yale, and Duke University (搜索).
The longitudinal, multi-center registry aims to improve understanding of sarcoidosis (搜索) through standardized data collection across geographically and ethnically diverse patient populations.
FSR spent two years developing the protocol with input from patients, caregivers, clinicians, and pharmaceutical partners to address the disease's multi-disciplinary nature.
The Foundation for Sarcoidosis Research (搜索) (FSR) has announced the selection of 13 inaugural clinical centers as data gathering sites for the national FSR Clinical Data Registry, marking a pivotal milestone in the effort to accelerate research and improve outcomes for patients living with this rare inflammatory disease. Powered by the FSR Global Sarcoidosis (搜索) Clinic Alliance (FSR-GSCA), the registry will serve as a critical resource for the research community by supporting high-quality, standardized data collection across a network of expert sarcoidosis centers.
The selected institutions—pending final contracting—include Brigham and Women's Hospital, Cedars-Sinai Medical Center, Duke University (搜索), 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, and Yale University (搜索).
A Two-Year Effort to Build a Research Infrastructure
To ensure the registry captures information most useful to advancing sarcoidosis (搜索) research and improving 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, the organization built a unique protocol and data collection strategy aimed at improving understanding of the multi-disciplinary nature of sarcoidosis.
The longitudinal, multi-center approach is designed to ensure geographic, ethnic, and environmental diversity, strengthening the broader sarcoidosis (搜索) research ecosystem. The registry aims to create a powerful comparative data set that will empower the field to improve diagnosis and screening, enhance 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.
Leadership Perspectives on the Registry's Potential
Mary McGowan, President and CEO of FSR, emphasized the urgency driving the initiative. "Sarcoidosis (搜索) has remained a mystery for over 150 years. We can no 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," McGowan said. "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."
Dr. Lisa Maier from National Jewish Health, who serves as Steering Committee Co-Chair, highlighted the registry's significance for the rare disease community. "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," Dr. Maier said. "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 (搜索), underscored the patient-centered vision behind the registry. "Every sarcoidosis (搜索) 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."
Institutional Commitment Across the Network
Participating institutions expressed strong commitment to the collaborative effort. Dr. Matthew Baker and Dr. Lakshmi Jayaram from Stanford University described the registry as "one of the most important collaborative initiatives in sarcoidosis (搜索) research today," adding that Stanford looks 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."
Dr. Connie Hsia from UT Southwestern noted, "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 (搜索)."
Complementing Existing Patient-Centered Resources
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 (搜索) 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.
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.
About Sarcoidosis (搜索)
Sarcoidosis (搜索) is a rare inflammatory disease characterized by granulomas—tiny clumps of inflammatory cells—that can form in one or more organs. Approximately 90% of patients living with sarcoidosis have lung involvement. Despite advances in research, sarcoidosis remains challenging to diagnose, with limited treatment options and no known cure. Approximately 175,000 people live with sarcoidosis in the United States. Since its establishment in 2000, FSR has fostered over $10 million in sarcoidosis-specific research efforts.