Consensus statement on standard of care for congenital muscular dystrophies

Title

Consensus statement on standard of care for congenital muscular dystrophies

Creator

Wang CH; Bonnemann CG; Rutkowski A; Sejersen T; Bellini J; Battista V; Florence JM; Schara U; Schuler PM; Wahbi K; Aloysius A; Bash RO; Beroud C; Bertini E; Bushby K; Cohn RD; Connolly AM; Deconinck N; Desguerre I; Eagle M; Estournet-Mathiaud B; Ferreiro A; Fujak A; Goemans N; Iannaccone ST; Jouinot P; Main M; Melacini P; Mueller-Felber W; Muntoni F; Nelson LL; Rahbek J; Quijano-Roy S; Sewry C; Storhaug K; Simonds A; Tseng B; Vajsar J; Vianello A; Zeller R

Publisher

Journal Of Child Neurology

Date

2010

Description

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.
2010

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

1559-1581

Issue

12

Volume

25

Citation

Wang CH; Bonnemann CG; Rutkowski A; Sejersen T; Bellini J; Battista V; Florence JM; Schara U; Schuler PM; Wahbi K; Aloysius A; Bash RO; Beroud C; Bertini E; Bushby K; Cohn RD; Connolly AM; Deconinck N; Desguerre I; Eagle M; Estournet-Mathiaud B; Ferreiro A; Fujak A; Goemans N; Iannaccone ST; Jouinot P; Main M; Melacini P; Mueller-Felber W; Muntoni F; Nelson LL; Rahbek J; Quijano-Roy S; Sewry C; Storhaug K; Simonds A; Tseng B; Vajsar J; Vianello A; Zeller R, “Consensus statement on standard of care for congenital muscular dystrophies,” Pediatric Palliative Care Library, accessed July 3, 2022, https://pedpalascnetlibrary.omeka.net/items/show/14097.

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