To understand self-reported incidence of new organ manifestations and quality of life impacts among those reporting neurosarcoidosis at baseline. 

The Foundation for Sarcoidosis Research (FSR) Patient Registry captures longitudinal data on demographics, disease experience, and quality of life from patients with sarcoidosis. 

Participants who completed Annual Follow-Up surveys through 12/2025 were included. We calculated incidence rates (IR) for new organ manifestations using modified Poisson regression accounting for person-time between surveys, and modeled Sarcoidosis Health Questionnaire (SHQ) scores, total (T) and subdomains Daily Functioning (DF), Physical Functioning (PF), and Emotional Functioning (EF), at follow-up adjusting for age at baseline, sex, race, years between baseline and follow-up, and respective SHQ baseline score.  

Among the 970 included participants, average time to follow-up between surveys was 3.9 years, with 72% identifying as White and 10% as African American. At baseline, 13.8% reported brain/cranial nerve involvement (BCN), and 18.3% reported peripheral nerve involvement (PN). Among participants with BCN, the most treatment-relevant IRs of new organ involvement per 1,000 person-years were skin (71), heart (67), peripheral nerves (59), liver (54), and eyes (19). All SHQ domains at follow-up were not significantly different among participants with BCN, PN, or BCN+PN. However, participants with PN had 0.55-point lower SHQ-DF, 0.51-point lower SHQ-EF, and 0.56-point lower SHQ-T scores at follow-up compared with patients with who reported neither BCN nor PN (P<0.01).

Individuals in the FSR Patient Registry frequently report development of additional organ involvement and quality of life impacts years after initial diagnosis. These findings underscore the multisystem nature of sarcoidosis and the importance of long-term monitoring. The FSR Global Sarcoidosis Clinic Alliance is uniquely positioned to meet this need through its collaborative, multidisciplinary network of providers committed to evidence-based, patient-centered care, and sharing best practices that help sarcoidosis specialists ensure continuity of care as a patient’s sarcoidosis evolves.