期刊
ORPHANET JOURNAL OF RARE DISEASES
卷 16, 期 1, 页码 -出版社
BMC
DOI: 10.1186/s13023-021-01678-8
关键词
Skeletal dysplasia; Craniofacial; Best practice; Otolaryngology
资金
- BioMarin, Inc.
- Ultragenyx, Inc.
- Ascendis Inc.
- QED, Inc.
The Delphi method was used to develop best practice guidelines for managing the craniofacial aspects of patients with skeletal dysplasia. After comprehensive literature review and discussion, a list of 22 best practice guidelines was generated to provide context and assistance for clinicians in decision making.
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.
作者
我是这篇论文的作者
点击您的名字以认领此论文并将其添加到您的个人资料中。
推荐
暂无数据