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Best practice guidelines in managing the craniofacial aspects of skeletal dysplasia

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 internat...

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Autores principales: Savarirayan, Ravi, Tunkel, David E., Sterni, Laura M., Bober, Michael B., Cho, Tae-Joon, Goldberg, Michael J., Hoover-Fong, Julie, Irving, Melita, Kamps, Shawn E., Mackenzie, William G., Raggio, Cathleen, Spencer, Samantha A., Bompadre, Viviana, White, Klane K.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7809733/
https://www.ncbi.nlm.nih.gov/pubmed/33446226
http://dx.doi.org/10.1186/s13023-021-01678-8
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author Savarirayan, Ravi
Tunkel, David E.
Sterni, Laura M.
Bober, Michael B.
Cho, Tae-Joon
Goldberg, Michael J.
Hoover-Fong, Julie
Irving, Melita
Kamps, Shawn E.
Mackenzie, William G.
Raggio, Cathleen
Spencer, Samantha A.
Bompadre, Viviana
White, Klane K.
author_facet Savarirayan, Ravi
Tunkel, David E.
Sterni, Laura M.
Bober, Michael B.
Cho, Tae-Joon
Goldberg, Michael J.
Hoover-Fong, Julie
Irving, Melita
Kamps, Shawn E.
Mackenzie, William G.
Raggio, Cathleen
Spencer, Samantha A.
Bompadre, Viviana
White, Klane K.
author_sort Savarirayan, Ravi
collection PubMed
description 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.
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spelling pubmed-78097332021-01-15 Best practice guidelines in managing the craniofacial aspects of skeletal dysplasia Savarirayan, Ravi Tunkel, David E. Sterni, Laura M. Bober, Michael B. Cho, Tae-Joon Goldberg, Michael J. Hoover-Fong, Julie Irving, Melita Kamps, Shawn E. Mackenzie, William G. Raggio, Cathleen Spencer, Samantha A. Bompadre, Viviana White, Klane K. Orphanet J Rare Dis Research 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. BioMed Central 2021-01-14 /pmc/articles/PMC7809733/ /pubmed/33446226 http://dx.doi.org/10.1186/s13023-021-01678-8 Text en © The Author(s) 2021 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Savarirayan, Ravi
Tunkel, David E.
Sterni, Laura M.
Bober, Michael B.
Cho, Tae-Joon
Goldberg, Michael J.
Hoover-Fong, Julie
Irving, Melita
Kamps, Shawn E.
Mackenzie, William G.
Raggio, Cathleen
Spencer, Samantha A.
Bompadre, Viviana
White, Klane K.
Best practice guidelines in managing the craniofacial aspects of skeletal dysplasia
title Best practice guidelines in managing the craniofacial aspects of skeletal dysplasia
title_full Best practice guidelines in managing the craniofacial aspects of skeletal dysplasia
title_fullStr Best practice guidelines in managing the craniofacial aspects of skeletal dysplasia
title_full_unstemmed Best practice guidelines in managing the craniofacial aspects of skeletal dysplasia
title_short Best practice guidelines in managing the craniofacial aspects of skeletal dysplasia
title_sort best practice guidelines in managing the craniofacial aspects of skeletal dysplasia
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7809733/
https://www.ncbi.nlm.nih.gov/pubmed/33446226
http://dx.doi.org/10.1186/s13023-021-01678-8
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