FSR gathers global leaders to drive progress in sarcoidosis research
Two major gatherings identify research gaps, set goals for improving outcomes
The Foundation for Sarcoidosis Research (FSR) brought together more than 40 leading clinicians and researchers from around the world for an in-person meeting of the FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) and the FSR Sarcoidosis Biomarker Summit.
Together, these two gatherings marked a major step forward in international collaboration to improve sarcoidosis diagnosis, treatment, and patient outcomes.
“These meetings were more than just a milestone; they were a turning point,” Mary McGowan, the FSR’s president and CEO, said in a foundation press release. “The collaboration, passion, and shared expertise in the room will directly translate into better tools, resources, and outcomes for patients around the world.”
These initiatives were supported by FSR sponsors, with special recognition given to the Gold Sponsor, Amgen.
Understanding sarcoidosis and why diagnosis can be challenging
Sarcoidosis is an inflammatory disease marked by the formation of granulomas — tiny clumps of inflammatory cells — in one or more organs, most often the lungs. Over time, these granulomas can harden and cause lasting tissue damage.
Symptoms can be mild and may go unnoticed for months or even years before a diagnosis is made. In many cases, sarcoidosis is not identified until symptoms become more severe. Even then, because its signs often resemble those of other illnesses, getting an accurate diagnosis can take time.
The meeting opened with remarks from McGowan, followed by a keynote address from Scott Silvers, MD, of EBSCO Information Services. His talk highlighted the development of an artificial intelligence-enabled sarcoidosis repository designed to help clinicians collaborate across the FSR-GSCA network.
Breakout sessions, facilitated by FSR-GSCA leaders, focused on improving multidisciplinary care for sarcoidosis, strengthening engagement among community clinicians, and advancing patient-centered decision-making.
“The Global Sarcoidosis Clinic Alliance assembled multiple researchers, diverse healthcare professionals, and patient advocates to exchange ideas,” said Elliott Crouser, MD, a member of the FSR-GSCA at The Ohio State University Wexner Medical Center. “The vigorous engagement of its members was inspirational and will, no doubt, lead to improved clinical care and outcomes.”
Biomarker Summit explores the future of sarcoidosis diagnostics
The FSR Sarcoidosis Biomarker Summit that followed brought together 34 participants from 27 institutions to explore the rapidly advancing field of sarcoidosis biomarker research. In a keynote address, Freda Lewis-Hall, MD, former chief medical officer and executive vice president at Pfizer, emphasized the critical role of patient-centered perspectives in drug development.
“The key question for this room is, how do we make the data meaningful not just for 20 of the patients, or 100 of the patients, but for all the patients we want to serve,” Lewis-Hall said.
Participants identified gaps and challenges in the current development of sarcoidosis biomarkers and discussed strategies drawn from other diseases. They agreed on the need for a balanced roadmap that includes organ-specific biomarkers as well as biomarkers tied to certain clinical profiles, to address the full complexity of sarcoidosis.
The FSR will translate the insights from these meetings into white papers that summarize the principal findings and recommendations. It also plans to host follow-up workshops next year and launch virtual working groups focused on sarcoidosis biomarkers to help shape a strategic research roadmap.
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