Consensus statement on standard of care for congenital muscular dystrophies.
Consensus statement on standard of care for congenital muscular dystrophies.
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DOI：
10.1177/0883073810381924
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发表时间：
2010-12
影响因子：
1.9
通讯作者：
International Standard of Care Committee for Congenital Muscular Dystrophy
中科院分区：
文献类型：
--
作者：
Wang CH;Bonnemann CG;Rutkowski A;Sejersen T;Bellini J;Battista V;Florence JM;Schara U;Schuler PM;Wahbi K;Aloysius A;Bash RO;Béroud 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;International Standard of Care Committee for Congenital Muscular Dystrophy
先天性肌营养不良症是一组罕见的神经肌肉疾病，具有广泛的临床表型。最近的进展，了解分子发病机制的先天性肌营养不良症，使更好的诊断。然而，先天性肌营养不良症患者的医疗护理仍然非常多样化。许多医疗技术领域的进步尚未在临床实践中采用。先天性肌营养不良症国际护理标准委员会的成立旨在确定当前的护理问题，审查循证实践的文献，并就7个领域的护理建议达成共识：诊断，神经病学，肺病学，骨科/康复，胃肠病学/营养/言语/口腔护理，心脏病学和姑息治疗。为了就护理建议达成共识，进行了2项单独的在线调查，以调查该领域专家和先天性肌营养不良症家庭的意见。2009年11月在比利时布鲁塞尔举行的为期三天的研讨会上达成了最后共识。本共识声明描述了该委员会的护理建议。
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.
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影响因子：
3.1
作者：
Dohna-Schwake, Christian;Ragette, Regine;Mellies, Uwe
通讯作者：
Mellies, Uwe
DOI：
10.1177/1049909109346165
发表时间：
2009-10
期刊：
The American journal of hospice & palliative care
影响因子：
--
作者：
Engel JM;Kartin D;Carter GT;Jensen MP;Jaffe KM
通讯作者：
Jaffe KM
影响因子：
2.8
作者：
Farina, L;Morandi, L;Savoiardo, M
通讯作者：
Savoiardo, M
影响因子：
3.1
作者：
Dohna-Schwake, C.;Podlewski, P.;Mellies, U.
通讯作者：
Mellies, U.
影响因子：
3.1
作者：
Darke, Joanne;Bushby, Kate;McConachie, Helen
通讯作者：
McConachie, Helen