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

Improving patient outcomes in fibrous dysplasia/McCune-Albright syndrome: an international... Summary To develop consensus on improving the management of patients’ experience in getting a diagnosis, the knowledge of patients, we convened an international workshop involving of general clinical staff, and understanding long-term out- patients, clinicians, and researchers. Key findings included the comes. The research workshop prioritized collaborations that diagnostic delay and variability in subsequent management with improved understanding of the contemporary natural history agreement to develop an international natural history study. We of fibrous dysplasia/McCune-Albright syndrome (FD/MAS). now invite other stakeholders to join the partnership. The clinical workshop outlined the key issues around diag- Purpose The aim of this study was develop a consensus on nostics, assessment of severity, treatment and monitoring of how to improve the management of patients with fibrous dys- patients. plasia and prioritize areas for research Conclusions In spite of advances in understanding the genetic Methods An international workshop was held over 3 days and molecular underpinnings of fibrous dysplasia/McCune- involving patients, clinicians, and researchers. Each day had Albright syndrome, clinical management remains a challenge. a combination of formal presentations and facilitated discus- From the workshop, a consensus was reached to create an sions that focused on clinical pathways and research. international, multi-stakeholder partnership to http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Archives of Osteoporosis Springer Journals

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

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Publisher
Springer Journals
Copyright
Copyright © 2017 by International Osteoporosis Foundation and National Osteoporosis Foundation
Subject
Medicine & Public Health; Orthopedics; Endocrinology
ISSN
1862-3522
eISSN
1862-3514
DOI
10.1007/s11657-016-0271-6
pmid
28243882
Publisher site
See Article on Publisher Site

Abstract

Summary To develop consensus on improving the management of patients’ experience in getting a diagnosis, the knowledge of patients, we convened an international workshop involving of general clinical staff, and understanding long-term out- patients, clinicians, and researchers. Key findings included the comes. The research workshop prioritized collaborations that diagnostic delay and variability in subsequent management with improved understanding of the contemporary natural history agreement to develop an international natural history study. We of fibrous dysplasia/McCune-Albright syndrome (FD/MAS). now invite other stakeholders to join the partnership. The clinical workshop outlined the key issues around diag- Purpose The aim of this study was develop a consensus on nostics, assessment of severity, treatment and monitoring of how to improve the management of patients with fibrous dys- patients. plasia and prioritize areas for research Conclusions In spite of advances in understanding the genetic Methods An international workshop was held over 3 days and molecular underpinnings of fibrous dysplasia/McCune- involving patients, clinicians, and researchers. Each day had Albright syndrome, clinical management remains a challenge. a combination of formal presentations and facilitated discus- From the workshop, a consensus was reached to create an sions that focused on clinical pathways and research. international, multi-stakeholder partnership to

Journal

Archives of Osteoporosis – Springer Journals

Published: Feb 27, 2017

References

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