Diagnostic journey for individuals with fibrous dysplasia / McCune albright syndrome (FD/MAS).
Kaiyang SongRoshi ShresthaHeather DelaneyRohit VijjhalwarAlison TurnerMaria SanchezMuhammad Kassim JavaidPublished in: Orphanet journal of rare diseases (2024)
Individuals with FDMAS have a variable time to diagnosis that can span decades. This study highlights the need for further research on how to improve diagnostic pathways within Orthopaedic and Ear, Nose and Throat (ENT)/Maxillofacial services. Our data provides a baseline to assess the impact of novel NHS diagnostic networks on reducing the diagnostic odyssey.