Journal article
Best practice guidelines in managing the craniofacial aspects of skeletal dysplasia
R Savarirayan, DE Tunkel, LM Sterni, MB Bober, TJ Cho, MJ Goldberg, J Hoover-Fong, M Irving, SE Kamps, WG Mackenzie, C Raggio, SA Spencer, V Bompadre, KK White
Orphanet Journal of Rare Diseases | BMC | Published : 2021
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 lis..
View full abstractGrants
Funding Acknowledgements
This study was funded through unrestricted grants by BioMarin, Inc.; Ultragenyx, Inc.; Ascendis Inc. and QED, Inc.