Knowledge, skills and attitudinal gaps in diagnosis and management of Fibrodysplasia Ossificans Progressiva in the United States
This study assesses healthcare provider knowledge, confidence, and management practices related to fibrodysplasia ossificans progressiva (FOP). Findings highlight gaps in recognition of key clinical indications, as well as challenges in patient management, referral pathways and access to specialized care.
The results underscore the need for improved rare disease recognition, multidisciplinary collaboration, and system-level approaches to support timely diagnosis and optimal patient management.
This study was made possible with the support of IPSEN Biopharmaceuticals Inc.
Read the full article: https://doi.org/10.1093/jbmrpl/ziag076