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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.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.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.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.

Original publication

DOI

10.1007/s11657-016-0271-6

Type

Journal article

Journal

Archives of osteoporosis

Publication Date

12/2017

Volume

12

Addresses

Division of Endocrinology and Diabetes, Children's National Medical Center, Washington, DC, USA.

Keywords

Humans, Fibrous Dysplasia, Polyostotic, Severity of Illness Index, International Cooperation, Adult, Patient-Centered Care, Disease Management, Female, Male, Delayed Diagnosis, Quality Improvement, Symptom Assessment