Foundation for Sarcoidosis Research Announces Launch of Enhanced Sarcoidosis Data Registry

By: Foundation for Sarcoidosis Research via GlobeNewswire

July 01, 2025 at 10:16 AM EDT

CHICAGO, July 01, 2025 (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, is proud to announce the launch of a new and enhanced version of the FSR-SARC Registry, the Sarcoidosis Advanced Registry for Cures.

The FSR-SARC Registry is an IRB-approved, longitudinal, patient-powered database designed to accelerate sarcoidosis research by collecting critical insights on diagnosis, organ manifestation, treatments, symptoms, and impacts on quality of life. With nearly 7,000 participants from 68 different countries to date, the Registry is a cornerstone of FSR’s mission to advance understanding and treatment of this complex and often misunderstood disease.

The upgraded FSR-SARC Registry introduces a new, user-friendly platform (in partnership with Across Healthcare) with expanded features to maximize the impact of patient participation. Participants can now more easily share their experiences, update their information, and contribute to a growing body of knowledge that supports both clinical research and improved patient outcomes.

Key Features and Benefits of the New FSR-SARC Registry:

Enhanced Data Collection: The registry now captures even more comprehensive information on patients impacted by sarcoidosis. In addition to questionnaires and surveys, participants receiving care in the U.S. can link the Registry directly to their provider’s patient portal.
Improved Security and Privacy: Hosted on Across Healthcare’s HIPAA-compliant platform, the Registry ensures that all personal health information is encrypted, securely stored, and only shared in de-identified form with approved researchers.
Empowering Patient Voices: By enabling patients and caregivers to self-report their experiences, the registry provides critical insights into the variability, progression, and burden of sarcoidosis, informing future research and care recommendations.
Facilitating Research and Clinical Trials: The registry connects interested patients to IRB-approved research opportunities based on both their eligibility and proximity to trial sites, helping to stimulate hypothesis-driven research and support the development of new treatments.
Commitment to Representation and Access: FSR remains dedicated to expanding the variety of Registry participants and ensuring representation of all sarcoidosis patients.

“FSR is committed to empowering patients and accelerating research through the FSR-SARC Registry. We are immensely grateful for the extraordinary commitment of the sarcoidosis community in giving of their time and insights to inform and drive sarcoidosis research,” said Mary McGowan, President and CEO of FSR. “Now in its tenth year, the Registry has been one of our most powerful tools to elevate patient voices in the advancement of sarcoidosis research. The enhanced surveys and platform represent a significant step forward in our efforts to drive innovation elevate patient-centered drug development, and improve patient outcomes for all impacted by sarcoidosis.”

Participation in the FSR-SARC Registry is voluntary, confidential, and open to all individuals living with sarcoidosis or their caregivers. By joining, participants help shape the future of sarcoidosis research and care.

For more information about the FSR-SARC Registry and to sign up, please visit www.stopsarcoidosis.org/registry

About Sarcoidosis

Sarcoidosis is a rare inflammatory disease characterized by granulomas—tiny clumps of inflammatory cells—that can form in one or more organs. 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.

About the Foundation for Sarcoidosis Research

The Foundation for Sarcoidosis Research (FSR) is the leading international organization dedicated to finding a cure for sarcoidosis and improving care for those living with the disease through research, education, and support. For more information about FSR and its community programs, visit: www.stopsarcoidosis.org.

Media Contact:

Cathi Davis, Director of Communications and Marketing

Foundation for Sarcoidosis Research

cathi@stopsarcoidosis.org