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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Rehabilitation for Daily Life Function for Persons with FD/MAS -Video

Axial and Appendicular Management General

Please 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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Covid-19 and FD/MAS 2021 Update -Video

General

COVID-19 and FD/MAS, an updated discussion hosted by FD/MAS Alliance with Drs. Alison Boyce, Michael Collins, Ed Hsiao, Robert Stanton, and Kelly Wentworth, March 2021.

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Covid-19 and FD/MAS 2020 -Video

General

COVID-19 and FD/MAS, a 2020 discussion hosted by FD/MAS Alliance with Drs. Alison Boyce, Michael Collins, Edward Hsiao, and Robert Stanton, and with Spanish translation by Ms. Karen Pozo The video did experience some interruption in the first five minutes but is clean through the remainder.

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FD/MAS and Reproductive Health – Video

Comorbidity Endocrine Care General

This December 2021 discussion covers fibrous dysplasia and McCune-albright syndrome (FD/MAS) and reproductive health with Dr. Veronica Gomez-Lobo of the NIH and FD/MAS Alliance President Lauren Ruotolo.

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Stigma and psychological distress among pediatric participants in the FD/MAS Alliance Patient Registry

General

This 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 […]

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