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

Standard

Improving patient outcomes in fibrous dysplasia/McCune-Albright syndrome : an international multidisciplinary workshop to inform an international partnership. / Boyce, A M; Turner, A; Watts, L; Forestier-Zhang, L; Underhill, A; Pinedo-Villanueva, R; Monsell, F; Tessaris, D; Burren, C; Masi, L; Hamdy, N; Brandi, M L; Chapurlat, R; Collins, M T; Javaid, Muhammad Kassim.

In: Archives of osteoporosis, Vol. 12, No. 1, 12.2017, p. 21.

Research output: Contribution to journalArticle

Harvard

Boyce, AM, Turner, A, Watts, L, Forestier-Zhang, L, Underhill, A, Pinedo-Villanueva, R, Monsell, F, Tessaris, D, Burren, C, Masi, L, Hamdy, N, Brandi, ML, Chapurlat, R, Collins, MT & Javaid, MK 2017, 'Improving patient outcomes in fibrous dysplasia/McCune-Albright syndrome: an international multidisciplinary workshop to inform an international partnership' Archives of osteoporosis, vol 12, no. 1, pp. 21. DOI: 10.1007/s11657-016-0271-6

APA

Boyce, A. M., Turner, A., Watts, L., Forestier-Zhang, L., Underhill, A., Pinedo-Villanueva, R., ... Javaid, M. K. (2017). Improving patient outcomes in fibrous dysplasia/McCune-Albright syndrome: an international multidisciplinary workshop to inform an international partnership. Archives of osteoporosis, 12(1), 21. DOI: 10.1007/s11657-016-0271-6

Vancouver

Boyce AM, Turner A, Watts L, Forestier-Zhang L, Underhill A, Pinedo-Villanueva R et al. Improving patient outcomes in fibrous dysplasia/McCune-Albright syndrome: an international multidisciplinary workshop to inform an international partnership. Archives of osteoporosis. 2017 Dec;12(1):21. Available from, DOI: 10.1007/s11657-016-0271-6

Author

Boyce, A M; Turner, A; Watts, L; Forestier-Zhang, L; Underhill, A; Pinedo-Villanueva, R; Monsell, F; Tessaris, D; Burren, C; Masi, L; Hamdy, N; Brandi, M L; Chapurlat, R; Collins, M T; Javaid, Muhammad Kassim / Improving patient outcomes in fibrous dysplasia/McCune-Albright syndrome : an international multidisciplinary workshop to inform an international partnership.

In: Archives of osteoporosis, Vol. 12, No. 1, 12.2017, p. 21.

Research output: Contribution to journalArticle

Bibtex

@article{49417d40fc2046b88385e2027af22405,
title = "Improving patient outcomes in fibrous dysplasia/McCune-Albright syndrome: an international multidisciplinary workshop to inform an international partnership",
keywords = "Journal Article",
author = "Boyce, {A M} and A Turner and L Watts and L Forestier-Zhang and A Underhill and R Pinedo-Villanueva and F Monsell and D Tessaris and C Burren and L Masi and N Hamdy and Brandi, {M L} and R Chapurlat and Collins, {M T} and Javaid, {Muhammad Kassim}",
year = "2017",
month = "12",
doi = "10.1007/s11657-016-0271-6",
volume = "12",
pages = "21",
journal = "Archives of osteoporosis",
issn = "1862-3514",
publisher = "Springer London",
number = "1",

}

RIS - suitable for import to EndNote

TY - JOUR

T1 - Improving patient outcomes in fibrous dysplasia/McCune-Albright syndrome

T2 - Archives of osteoporosis

AU - Boyce,A M

AU - Turner,A

AU - Watts,L

AU - Forestier-Zhang,L

AU - Underhill,A

AU - Pinedo-Villanueva,R

AU - Monsell,F

AU - Tessaris,D

AU - Burren,C

AU - Masi,L

AU - Hamdy,N

AU - Brandi,M L

AU - Chapurlat,R

AU - Collins,M T

AU - Javaid,Muhammad Kassim

PY - 2017/12

Y1 - 2017/12

N2 - <p>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.</p><p>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.</p><p>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.</p><p>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.</p>

AB - <p>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.</p><p>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.</p><p>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.</p><p>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.</p>

KW - Journal Article

U2 - 10.1007/s11657-016-0271-6

DO - 10.1007/s11657-016-0271-6

M3 - Article

VL - 12

SP - 21

JO - Archives of osteoporosis

JF - Archives of osteoporosis

SN - 1862-3514

IS - 1

ER -