Research Archive

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.

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Best 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.

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Bone-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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Research

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Fibrous dysplasia/McCune-Albright syndrome: state-of-the-art advances, pathogenesis, and basic/translational research

Research

Palmisano, B., Berry, C., Boyce, A. et al. Fibrous dysplasia/McCune-Albright syndrome: state-of-the-art advances, pathogenesis, and basic/translational research. Orphanet J Rare Dis 20, 414 (2025). https://doi.org/10.1186/s13023-025-03909-8 This publication stems from discussion and drafting that took place at the 2023 FD/MAS Community Conference, sponsored by FD/MAS Alliance.  FD was recognized as a distinct clinical entity shortly after the first reports in […]

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Safety and Efficacy of Moderate-dose Denosumab in Fibrous Dysplasia: Observational Results From a Phase 2 Clinical Trial

Endocrine Care FDMA: General Studies Research

Moderate-dose denosumab may provide clinical benefits comparable to the high-dose regimen in adults with FD while potentially lowering associated risks. However, discrepancies in the duration of efficacy are an important potential safety concern. Vivian Szymczuk, Ibrahim I Elbashir, Ramzy Ahmed, Luis F de Castro, Kelly Milligan, Xiaobai Li, Babak Saboury, Alison M Boyce The Journal […]

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Identifying Pain Subtypes in Patients With Craniofacial Lesions of Fibrous Dysplasia/McCune-Albright Syndrome

Craniofacial care Pain Research

Background: Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a genetic disorder, marked by bone lesions, often affecting the craniofacial skeleton. Pain is a prevalent yet heterogeneous symptom reported by patients with craniofacial FD. Effective treatments are currently lacking, posing a significant clinical challenge to patient care. Purpose: This preliminary study examined pain profiles in craniofacial FD and […]

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Dissecting the heterogeneity of craniofacial lesions in patients with fibrous dysplasia/ McCune–Albright Syndrome

Craniofacial care

Abstract. Fibrous dysplasia/McCune–Albright Syndrome (FD/MAS) frequently involves the craniofacial skeleton. Craniofacial fibrous dysplasia lesions exhibit diverse imaging characteristics on multimodality evaluation, utilizing radiographs, computed tomography (CT), magnetic resonance imaging (MRI), and 18F-sodium fluoride positron emission tomography (18F-NaF PET). A multimodal imaging classification of craniofacial fibrous dysplasia lesions may offer clinical insights into the types of […]

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Pharmacological Interventions Targeting Pain in Fibrous Dysplasia/McCune–Albright Syndrome

FDMA: General Studies General Pain Research

Fibrous dysplasia (FD) is a rare, non-inherited bone disease occurring following a somatic gain-of-function R201 missense mutation of the guanine-nucleotide binding protein alpha subunit stimulating activity polypeptide 1 (GNAS) gene. The spectrum of the disease ranges from a single FD lesion to a combination with extraskeletal features; an amalgamation with café-au-lait skin hyperpigmentation, precocious puberty, and other endocrinopathies […]

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