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Rare diseases / Respiratory therapy / Motor neurone disease / Congenital disorders / Duchenne muscular dystrophy / Spinal muscular atrophies / Congenital muscular dystrophy / Pulmonary function testing / Walker–Warburg syndrome / Health / Medicine / Muscular dystrophy


Journal http://jcn.sagepub.com/ of Child Neurology Consensus Statement on Standard of Care for Congenital Muscular Dystrophies Ching H. Wang, Carsten G. Bonnemann, Anne Rutkowski, Thomas Sejersen, Jonathan Bellini, Vanes
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Document Date: 2012-01-27 00:19:10

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genetic and medical technology / online version / early intervention services / psychology/psychiatry services / care for patients with neuromuscular disorders / protein products / gas dilution / online surveys / separate online surveys / medical technology / appropriate Internet links / insurance coverage / online survey / /

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microcephaly / manually assisted cough / Repeated chest infections / acute illness / muscle syndrome / polymicrogyria and focal cortical dysplasia / gastroesophageal reflux / brain disease / severe scoliosis / febrile illness / deformity / encephalocele / repeated infections / pulmonary problems / scoliosis / asthma / dropped head syndrome / chronic respiratory compromise / hypoventilation / chest wall deformities / arousal inducing sleep fragmentation / Cough AssistTM / Congenital Muscular Dystrophies Ching H. Wang / pulmonary recruitment / contractures/scoliosis / Seizure / recurrent chest infections / specific congenital muscular dystrophy / distinct congenital muscular dystrophy / rare disorders / epilepsy / infection / deficiency / respiratory infection / pulmonary symptoms / status epilepticus / glaucoma / neuromuscular disorders / headaches / headache / cardiac failure / central nervous system abnormalities / focal cortical dysplasia / A/C congenital muscular dystrophy / secondary generalized seizures / nausea / muscle weakness / axial muscle weakness / productive cough / cerebellar cysts / undiagnosed congenital muscular dystrophies / influenza / pulmonary impairment / obstructive sleep apneas / restrictive lung disease / common congenital muscular dystrophy / each congenital muscular dystrophy / disease / cataracts / central apneas / pediatric pulmonary expert / subclinical cardiomyopathy / proximal contractures / symptomatic nocturnal hypoventilation / patient’s congenital muscular dystrophy / profound mental retardation / cough / respiratory failure Muscle weakness / pulmonary treatments / acute infection / Congenital muscular dystrophies / respiratory distress / spine deformities / Walker-Warburg Early onset mental retardation / pulmonary assessment / severe myopia / seizures / Peak cough / congenital muscular dystrophy remains / pulmonary care / CMD / undefined congenital muscular dystrophy / pulmonary / critical illness / acute respiratory infection / generalized seizures / repeated respiratory infections / deficient congenital muscular dystrophy / myopathies / ineffective cough / refractory seizures / pneumonia / mental retardation / SEPN1-related myopathies / recurrent infection / respiratory failure / partial merosin deficiency / shortness of breath / neck contractures / pulmonary function / respiratory infections / A/C congenital muscular dystrophy Hypotonia / frequent infections / polymicrogyria / respiratory muscle weakness / early respiratory failure / severe respiratory infections / disease/Walker-Warburg syndrome / choking / muscular dystrophy / genetic neuromuscular disorders / particularly recurrent infections / both peak cough / Respiratory tract infections / fatigue / severe hypotonia / neuromuscular disease / assisted coughing techniques / nocturnal respiratory failure / chronic atelectasis / tachycardia / constipation / spinal muscle atrophy / airway obstruction / rare neuromuscular disorders / atelectasis / joint contractures / heart failure / chronic ventilation / muscular dystrophies / congenital muscular dystrophy / merosin-negative congenital muscular dystrophy / weak cough / /

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Andrea Vianello / Christophe Be´roud / Caroline Sewry / Enfants Reine Fabiola / Carsten G. Bonnemann / Ana Ferreiro / Anne Rutkowski / Ronald D. Cohn / Ulrike Schara / Brian Tseng / Francesco Muntoni / Anne M. Connolly / Reinhard Zeller / Susana Quijano-Roy / Nathalie Goemans / Pamela M. Schuler / Albert Fujak / Vanessa Battista / Brigitte Estournet / Syndromic / Ching H. Wang / Gene Symbol / Kari Storhaug / Isabelle Desguerre / Annie Aloysius / Marion Main / Nicolas Deconinck / Karim Wahbi / Patricia Jouinot / Leslie L. Nelson / Respiratory / Susan T. Iannaccone / Raymond Poincare / Robert O. Bash / Wolfgang Mueller-Felber / Jiri Vajsar / Enrico Bertini / Anita Simonds / Brigitte Estournet-Mathiaud / Kate Bushby / Thomas Sejersen / Paola Melacini / Jes Rahbek / Michelle Eagle / Jonathan Bellini / Christophe Béroud / /

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anesthesiologist / pediatric cardiologist / physician / dietician / Author / pediatric neurologist / genetic counselor / congenital Corresponding Author / large head / palliative care specialist / pediatric orthopedist / spine surgeon / pediatric neuromuscular specialist / /

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