Best practice guidelines for management of spinal disorders in skeletal dysplasia.

Cervical instability Kyphosis Myelopathy Scoliosis Skeletal dysplasia Spinal cord compression Spine

Journal

Orphanet journal of rare diseases
ISSN: 1750-1172
Titre abrégé: Orphanet J Rare Dis
Pays: England
ID NLM: 101266602

Informations de publication

Date de publication:
24 06 2020
Historique:
received: 15 02 2020
accepted: 20 05 2020
entrez: 26 6 2020
pubmed: 26 6 2020
medline: 22 6 2021
Statut: epublish

Résumé

Disorders of the spine present a common and difficult management concern in patients with skeletal dysplasia. Due to the rarity of these conditions however, the literature, largely consisting of small, single institution case series, is sparse in regard to well-designed studies to support clinical decision making in these situations. 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 care of spinal disorders in patients with skeletal dysplasia. Starting with 33 statements, the group a developed a list of 31 "best practice" guidelines. The guidelines are presented and discussed to provide context for clinicians in their decision making in this often-challenging realm of care.

Sections du résumé

BACKGROUND
Disorders of the spine present a common and difficult management concern in patients with skeletal dysplasia. Due to the rarity of these conditions however, the literature, largely consisting of small, single institution case series, is sparse in regard to well-designed studies to support clinical decision making in these situations.
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 care of spinal disorders in patients with skeletal dysplasia.
RESULTS
Starting with 33 statements, the group a developed a list of 31 "best practice" guidelines.
CONCLUSIONS
The guidelines are presented and discussed to provide context for clinicians in their decision making in this often-challenging realm of care.

Identifiants

pubmed: 32580780
doi: 10.1186/s13023-020-01415-7
pii: 10.1186/s13023-020-01415-7
pmc: PMC7313125
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

161

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Auteurs

Klane K White (KK)

Department of Orthopedics and Sports Medicine, Seattle Children's Hospital, 4800 Sand Point Way, OA.9.120, Seattle, Washington, 98105, USA. klane.white@seattlechildrens.org.
Department of Orthopaedics and Sports Medicine, University of Washington, Seattle, WA, USA. klane.white@seattlechildrens.org.

Michael B Bober (MB)

Division of Orthogenetics, Nemours/ A.I. duPont Hospital for Children, Wilmington, DE, USA.

Tae-Joon Cho (TJ)

Division of Pediatric Orthopaedics, Seoul National University Children's Hospital, Seoul, South Korea.

Michael J Goldberg (MJ)

Department of Orthopedics and Sports Medicine, Seattle Children's Hospital, 4800 Sand Point Way, OA.9.120, Seattle, Washington, 98105, USA.
Department of Orthopaedics and Sports Medicine, University of Washington, Seattle, WA, USA.

Julie Hoover-Fong (J)

McKusick-Nathans Department of Genetic Medicine, Johns Hopkins University, Baltimore, MD, USA.

Melita Irving (M)

Department of Clinical Genetics Guy's and St Thomas NHS, London, UK.

Shawn E Kamps (SE)

Department of Radiology, Seattle Children's Hospital, Seattle, WA, USA.
Department of Radiology, University of Washington, Seattle, WA, USA.

William G Mackenzie (WG)

Department of Orthopedic Surgery, Nemours/ A.I. duPont Hospital for Children, Wilmington, DE, USA.

Cathleen Raggio (C)

Department of Orthopedic Surgery, Hospital for Special Surgery, New York, NY, USA.

Samantha A Spencer (SA)

Department of Orthopedic Surgery, Boston Children's Hospital, Boston, MA, USA.

Viviana Bompadre (V)

Department of Orthopedics and Sports Medicine, Seattle Children's Hospital, 4800 Sand Point Way, OA.9.120, Seattle, Washington, 98105, USA.

Ravi Savarirayan (R)

Victorian Clinical Genetics Services, Murdoch Children's Research Institute, University of Melbourne, Parkville, Victoria, Australia.

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