Consensus Statement on Standard of Care for Congenital Muscular Dystrophies - Aix-Marseille Université Access content directly
Journal Articles Journal of Child Neurology Year : 2010

Consensus Statement on Standard of Care for Congenital Muscular Dystrophies

Ching Wang
  • Function : Author
Carsten G Bonnemann
  • Function : Author
Anne Rutkowski
  • Function : Author
Thomas Sejersen
  • Function : Author
Jonathan Bellini
  • Function : Author
Vanessa Battista
  • Function : Author
Julaine M Florence
  • Function : Author
Ulrike Schara
  • Function : Author
Pamela M Schuler
  • Function : Author
Kari Wahbi
  • Function : Author
Annie Aloysius
  • Function : Author
Robert O Bash
  • Function : Author
Ronald D Cohn
  • Function : Author
Anne M Connolly
  • Function : Author
Albert Fujak
  • Function : Author
Nathalie Goemans
  • Function : Author
Patricia Jouinot
  • Function : Author
Marion Main
  • Function : Author
Paola Melacini
  • Function : Author
Wolfgang Mueller-Felber
  • Function : Author
Francesco Muntoni
Leslie L Nelson
  • Function : Author
Jes Rahbek
  • Function : Author
Caroline Sewry
  • Function : Author
  • PersonId : 896951
Kari Storhaug
  • Function : Author
Anita Simonds
  • Function : Author
Brian Tseng
  • Function : Author
Jiri Vajsar
  • Function : Author
Andrea Vianello
  • Function : Author

Abstract

Congenital muscular dystrophies are a group of rare neuromuscular disorders with a wide spectrum of clinical phenotypes. Recent advances in understanding the molecular pathogenesis of congenital muscular dystrophy have enabled better diagnosis. However, medical care for patients with congenital muscular dystrophy remains very diverse. Advances in many areas of medical technology have not been adopted in clinical practice. The International Standard of Care Committee for Congenital Muscular Dystrophy was established to identify current care issues, review literature for evidence-based practice, and achieve consensus on care recommendations in 7 areas: diagnosis, neurology, pulmonology, orthopedics/rehabilitation, gastroenterology/ nutrition/speech/oral care, cardiology, and palliative care. To achieve consensus on the care recommendations, 2 separate online surveys were conducted to poll opinions from experts in the field and from congenital muscular dystrophy families. The final consensus was achieved in a 3-day workshop conducted in Brussels, Belgium, in November 2009. This consensus statement describes the care recommendations from this committee.

Domains

Human genetics

Dates and versions

hal-01681828 , version 1 (11-01-2018)

Identifiers

Cite

Ching Wang, Carsten G Bonnemann, Anne Rutkowski, Thomas Sejersen, Jonathan Bellini, et al.. Consensus Statement on Standard of Care for Congenital Muscular Dystrophies. Journal of Child Neurology, 2010, 25 (12), pp.1559 - 1581. ⟨10.1177/0883073810381924⟩. ⟨hal-01681828⟩
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