C58-02 Multiorgan Involvement and Disease Burden in Sarcoidosis: Real-world Data From the Foundation for Sarcoidosis Research (FSR) Patient Registry

Abstract Rationale The Foundation for Sarcoidosis Research (FSR) Patient Registry is a robust longitudinal resource of patient-reported data on the variety of sarcoidosis experiences, disease impacts, treatments, and quality of care. Launched in 2014, the program now hosts 10 years of data from nearly 7,000 participants in over 68 countries. We analyzed the first decade of registry data to identify trends and assess opportunities for FSR strategic programs. Methods The registry captured data on demographics, diagnosis, organ involvement, medications, symptoms, employment and disability status, and the validated measures such as the Sarcoidosis Health Questionnaire. Participants completed the Baseline Questionnaire through the online Patient Registry platform and self-identified demographic, geographic, and disease-related characteristics. Participant data collected through March 2025 were included in descriptive analyses. Results During the first 10 years of the Patient Registry, 6,348 participants completed the Baseline Questionnaire. Registry participants were 72% female, 75% White, 19% Black/African American, and 6% Hispanic/Latino; nearly 25% reported belonging to more than one racial group. Respondents represented a wide range of ages (range: 18-80 years), geographies (Figure), and disease manifestations. Most participants reported they always or often felt tired over the past two weeks (79%), as well as regular feelings of depression over the past two weeks (73%). Multiorgan involvement was common, with 65% reporting more than one organ affected. Compared with those with less organ involvement, respondents with 5 or more organ systems involved experienced their first sarcoidosis symptoms nearly 4 years earlier and were diagnosed on average almost 3 years earlier. Overall, 23% reported they are no longer working due to disability, and 80% of those who are no longer employed needed to end their jobs due to sarcoidosis health effects. Conclusion FSR’s Patient Registry is one of the richest sources of real-world sarcoidosis data in the world. The registry provides critical real-world insights into the lived experience of patients with sarcoidosis patients, such as fatigue and depression remaining significant burdens, multi-organ involvement might indicate a need for earlier intervention, and substantial impacts on employment. Women are highly engaged in the registry and report significant, ongoing impacts on daily life, while lower male participation raises questions about disease prevalence or engagement barriers. Though reporting bias may limit generalizability, these insights highlight the need to improve representation, validate self-reported data, and enhance longitudinal tracking. The registry continues to guide research priorities, strengthen advocacy, and promote equitable care for all patients with sarcoidosis. This abstract is funded by: Foundation for Sarcoidosis Research