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Best practice guidelines in managing the craniofacial aspects of skeletal dysplasia

Authors :
Ravi Savarirayan
David E. Tunkel
Laura M. Sterni
Michael B. Bober
Tae-Joon Cho
Michael J. Goldberg
Julie Hoover-Fong
Melita Irving
Shawn E. Kamps
William G. Mackenzie
Cathleen Raggio
Samantha A. Spencer
Viviana Bompadre
Klane K. White
on behalf of the Skeletal Dysplasia Management Consortium
Source :
Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-13 (2021)
Publication Year :
2021
Publisher :
BMC, 2021.

Abstract

Abstract Background Recognition and appropriate management of the craniofacial manifestations of patients with skeletal dysplasia are challenging, due to the rarity of these conditions, and dearth of literature to support evidence-based clinical decision making. Methods Using the Delphi method, an international, multi-disciplinary group of individuals, with significant experience in the care of patients with skeletal dysplasia, convened to develop multi-disciplinary, best practice guidelines in the management of craniofacial aspects of these patients. Results After a comprehensive literature review, 23 initial statements were generated and critically discussed, with subsequent development of a list of 22 best practice guidelines after a second round voting. Conclusions The guidelines are presented and discussed to provide context and assistance for clinicians in their decision making in this important and challenging component of care for patients with skeletal dysplasia, in order standardize care and improve outcomes.

Details

Language :
English
ISSN :
17501172
Volume :
16
Issue :
1
Database :
Directory of Open Access Journals
Journal :
Orphanet Journal of Rare Diseases
Publication Type :
Academic Journal
Accession number :
edsdoj.b1c380dc7d44a36bbc876e1e4f67c64
Document Type :
article
Full Text :
https://doi.org/10.1186/s13023-021-01678-8