Orphanet Journal of Rare Diseases (Jun 2020)

Best practice guidelines for management of spinal disorders in skeletal dysplasia

  • Klane K. White,
  • 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,
  • Ravi Savarirayan,
  • on behalf of the Skeletal Dysplasia Management Consortium

DOI
https://doi.org/10.1186/s13023-020-01415-7
Journal volume & issue
Vol. 15, no. 1
pp. 1 – 11

Abstract

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Abstract 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.

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