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Archives of Osteoporosis
Published in: Archives of Osteoporosis 1/2017

01-12-2017 | Original Article

Improving patient outcomes in fibrous dysplasia/McCune-Albright syndrome: an international multidisciplinary workshop to inform an international partnership

Authors: A. M. Boyce, A. Turner, L. Watts, L. Forestier-Zhang, A. Underhill, R. Pinedo-Villanueva, F. Monsell, D. Tessaris, C. Burren, L. Masi, N. Hamdy, M. L. Brandi, R. Chapurlat, M. T. Collins, Muhammad Kassim Javaid

Published in: Archives of Osteoporosis | Issue 1/2017

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Abstract

Summary

To develop consensus on improving the management of patients, we convened an international workshop involving patients, clinicians, and researchers. Key findings included the diagnostic delay and variability in subsequent management with agreement to develop an international natural history study. We now invite other stakeholders to join the partnership.

Purpose

The aim of this study was develop a consensus on how to improve the management of patients with fibrous dysplasia and prioritize areas for research

Methods

An international workshop was held over 3 days involving patients, clinicians, and researchers. Each day had a combination of formal presentations and facilitated discussions that focused on clinical pathways and research.

Results

The patient workshop day highlighted the variability of patients’ experience in getting a diagnosis, the knowledge of general clinical staff, and understanding long-term outcomes. The research workshop prioritized collaborations that improved understanding of the contemporary natural history of fibrous dysplasia/McCune-Albright syndrome (FD/MAS). The clinical workshop outlined the key issues around diagnostics, assessment of severity, treatment and monitoring of patients.

Conclusions

In spite of advances in understanding the genetic and molecular underpinnings of fibrous dysplasia/McCune-Albright syndrome, clinical management remains a challenge. From the workshop, a consensus was reached to create an international, multi-stakeholder partnership to advance research and clinical care in FD/MAS. We invite other stakeholders to join the partnership.
Literature
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Weinstein LS, Shenker A, Gejman PV, Merino MJ, Friedman E, Spiegel AM (1991) Activating mutations of the stimulatory G protein in the McCune-Albright syndrome. N Engl J Med 325(24):1688–1695CrossRefPubMed
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Kelly MH, Brillante B, Kushner H, Gehron Robey P, Collins MT (2005) Physical function is impaired but quality of life preserved in patients with fibrous dysplasia of bone. Bone 37(3):388–394CrossRefPubMed
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Bousson V, Rey-Jouvin C, Laredo JD, Le Merrer M, Martin-Duverneuil N, Feydy A et al (2014) Fibrous dysplasia and McCune-Albright syndrome: imaging for positive and differential diagnoses, prognosis, and follow-up guidelines. Eur J Radiol 83(10):1828–1842CrossRefPubMed
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Collins MT, Kushner H, Reynolds JC, Chebli C, Kelly MH, Gupta A et al (2005) An instrument to measure skeletal burden and predict functional outcome in fibrous dysplasia of bone. J Bone Min Res: Off J Am Soc Bone Min Res 20(2):219–226CrossRef
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Metadata
Title
Improving patient outcomes in fibrous dysplasia/McCune-Albright syndrome: an international multidisciplinary workshop to inform an international partnership
Authors
A. M. Boyce
A. Turner
L. Watts
L. Forestier-Zhang
A. Underhill
R. Pinedo-Villanueva
F. Monsell
D. Tessaris
C. Burren
L. Masi
N. Hamdy
M. L. Brandi
R. Chapurlat
M. T. Collins
Muhammad Kassim Javaid
Publication date
01-12-2017
Publisher
Springer London
Published in
Archives of Osteoporosis / Issue 1/2017
Print ISSN: 1862-3522
Electronic ISSN: 1862-3514
DOI
https://doi.org/10.1007/s11657-016-0271-6

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