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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Covid-19 and FD/MAS 2021 Update -Video
GeneralCOVID-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 watchCovid-19 and FD/MAS 2020 -Video
GeneralCOVID-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 watchFD/MAS and Reproductive Health – Video
Comorbidity Endocrine Care GeneralThis 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.
Click to watchStigma 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 […]
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