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.
DOWNLOAD PDFResearch
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Optimizing your In-Person and Telehealth Visits
GeneralA discussion to empower you to make the most of your medical visits with fibrous dysplasia and McCune-Albright syndrome (FD/MAS) led by Medical Advisory Council Member Dr. Edward Hsiao of the University of California San Fransisco.
Click to watchFD 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 ReadFD/MAS and Research January 2023 Update
ResearchMany community members ask: Where are we on the path to a treatment? When will I be able to take this injection as a pill? What is the focus of research on FD/MAS these days? Dr. Alison Boyce of the NIH, the Chair of our Medical Advisory Council will discuss FD/MAS and research to address […]
Click to watchRehabilitation for Daily Life Function for Persons with FD/MAS -Video
Axial and Appendicular Management GeneralPlease enjoy this full recording of our November 8th, 2022 web program: Rehabilitation for daily life function for persons with FD/MAS, presented by Dr. Scott Paul of the NIH and FD/MAS advocate Tiffany Meyer.
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