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.

Click to Read

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.

DOWNLOAD PDF

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.

DOWNLOAD PDF

Research

This library is organized into several sections. Please use the links below to navigate to your section of interest. If you would like to nominate a published scientific work for inclusion, please contact us.

Filter Research by:

Optimizing your In-Person and Telehealth Visits

General

A 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 watch

FD/MAS and Research January 2023 Update

Research

Many 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 watch

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.

Click to watch

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.

Click to watch

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.

Click to watch
1 2 3