Archives of Osteoporosis

, 12:21 | Cite as

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

  • 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 Article

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.

Keywords

Fibrous dysplasia McCune-Albright syndrome Patient-centered care Epidemiology 

Notes

Acknowledgments

The workshop was supported by the Oxford NIHR Musculoskeletal BRU, NIHR Rare Diseases Translational Research Collaboration, MRC Lifecourse Epidemiology Unit, and International Osteoporosis Foundation. We are grateful to ProStrakan for providing funding towards the running costs of the workshop.

Compliance with ethical standards

Conflicts of interest

None.

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Copyright information

© International Osteoporosis Foundation and National Osteoporosis Foundation 2017

Authors and Affiliations

  • A. M. Boyce
    • 1
    • 2
    • 3
  • A. Turner
    • 4
  • L. Watts
    • 4
  • L. Forestier-Zhang
    • 4
  • A. Underhill
    • 5
  • R. Pinedo-Villanueva
    • 4
  • F. Monsell
    • 6
  • D. Tessaris
    • 7
  • C. Burren
    • 6
  • L. Masi
    • 8
  • N. Hamdy
    • 9
  • M. L. Brandi
    • 8
  • R. Chapurlat
    • 10
  • M. T. Collins
    • 1
  • Muhammad Kassim Javaid
    • 4
  1. 1.Skeletal Clinical Studies Unit, Craniofacial and Skeletal Diseases Branch, National Institute of Dental and Craniofacial ResearchNational Institutes of HealthBethesdaUSA
  2. 2.Bone Health Program, Division of Orthopedics and Sports MedicineChildren’s National Medical CenterWashingtonUSA
  3. 3.Division of Endocrinology and DiabetesChildren’s National Medical CenterWashingtonUSA
  4. 4.NIHR Musculoskeletal Biomedical Research Unit, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of OxfordNuffield Orthopaedic CentreOxfordUK
  5. 5.EastleighUK
  6. 6.Bristol Royal Hospital for ChildrenBristolUK
  7. 7.Department of Pediatric Endocrinology and Diabetology, Regina Margherita Children HospitalUniversity of TurinTurinItaly
  8. 8.Department of Internal MedicineUniversity of FlorenceFlorenceItaly
  9. 9.Department of Endocrinology and Metabolic DiseasesLeiden University Medical CentreLeidenThe Netherlands
  10. 10.NSERM UMR 1033, Department of RheumatologyUniversité de LyonLyonFrance

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