FD/MAS Publications
Association of Hearing Loss and Otologic Outcomes With Fibrous Dysplasia. JAMA Otolaryngol Head Neck Surg. 2018
Comorbidity, Craniofacial care
This study examines FD lesions surrounding the ear and skull base. Though many patients fear the loss of hearing, research suggests watchful waiting rather than aggressive surgery.
Click to ReadBest practice management guidelines for fibrous dysplasia/McCune-Albright syndrome: a consensus statement from the FD/MAS international consortium. Orphanet Journal of Rare Diseases 2019
General
Treatment guidelines compiled by the International Consortium of FD/MAS researchers. These guidelines include a series of flowcharts that can help patients and caregivers decide on appropriate screening and treatment plans.
DOWNLOAD PDFBone-Grafting in Polyostotic Fibrous Dysplasia. J Bone Joint Surg Am. 2016
Axial and Appendicular Management
Research suggests that bone grafting is not an effective way to remove FD lesions since lesions tend to regrow and take over otherwise healthy bone grafts.
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FD Pain Review Upadyay 2023
FDMA: General Studies ResearchPain in FD/MAS represents one of the most prominent aspects of the disease and one of the most challenging to treat—an outcome driven by (i) the heterogeneous nature of FD/MAS, (ii) the variable presentation of pain phenotypes (i.e., craniofacial vs. musculoskeletal pain), (iii) a lack of studies probing pain mechanisms, and (iv) a lack of […]
Click to ReadSafety and Efficacy of Denosumab for Fibrous Dysplasia of Bone
FDMA: Skeletal Studies ResearchIn this study involving patients with fibrous dysplasia of bone, denosumab was associated with marked reductions in the serum bone markers and with bony improvement. However, rebound hypercalcemia occurred. A study published in the New England Journal of Medicine, February 2023. Luis F. de Castro, Ph.D. Zachary Michel, B.S. Kristen Pan, M.D. Jocelyn Taylor, B.S. […]
Click to ReadStigma and psychological distress among pediatric participants in the FD/MAS Alliance Patient Registry
GeneralThis study establishes the illness experience of pediatric patients with FD / MAS is impacted by stigma and suggests they should be regularly screened for stigma and psychological distress. It supports the integration of clinical psychologists/ therapists in regular patient care, referral of families to advocacy organizations, and indicates that rare disease patient registries can […]
DOWNLOAD PDFAssessing quality of life in pediatric fibrous dysplasia and McCune Albright syndrome: PEDS-QL and HADS data from the Fibrous Dysplasia Foundation Patient Registry.
GeneralAn international group of thought leaders concerned with the care of patients with Fibrous Dysplasia/McCune Albright Syndrome (FD/MAS) recently encouraged treating physicians to use two measures to assess children’s health-related quality of life (QOL), the Pediatric Quality of Life Inventory (PEDS-QL) and the Hospital Anxiety and Depression scales (HADS). To date, no one has applied […]
DOWNLOAD PDFFibrous dysplasia patients with and without craniofacial involvement report reduced quality of life inclusive of stigma, depression, and anxiety
GeneralThis study uses data from the online self-report Fibrous Dysplasia Foundation Patient Registry and demonstrates a social psychological impact of fibrous dysplasia on adults, in those with and without craniofacial involvement and with mild and severe forms of the disease. Clinical treatment should encompass assessment of quality of life issues and ensure access to psychosocial […]
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