Skip to content

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

Research output: Contribution to journalArticle

  • 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
Original languageEnglish
Article number21
Number of pages6
JournalArchives of Osteoporosis
Volume12
Journal issue1
Early online date27 Feb 2017
DOIs
StateE-pub ahead of print - 27 Feb 2017

Abstract

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.

    Research areas

  • Fibrous dysplasia McCune-Albright syndrome Patient-centered care Epidemiology

Documents

DOI

View research connections

Related faculties, schools or groups