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Spinal muscular atrophies / SMN1 / Hypotonia / Muscular dystrophy / Amyotrophic lateral sclerosis / Muscle atrophy / Scoliosis / Neuromuscular Disorders / Atrophy / Medicine / Health / Motor neurone disease


Standard of Care in Spinal Muscular Atrophy: A Consensus Statement by the International SMA Standard of Care Committee
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Document Date: 2011-10-05 13:52:22

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File Size: 282,07 KB

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Web / Delphi / ESB / /

Continent

Europe / /

Country

Canada / United Kingdom / Italy / United States / /

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Event

Person Communication and Meetings / /

Facility

Cincinnati Children’s Hospital Medical Center / National Institute of Neurological Diseases / The Children’s Hospital of Philadelphia / Hammersmith Hospital / Johns Hopkins Hospital / University of Wisconsin Children’s Hospital / University of New Mexico Health Sciences Center / Stanford University Medical Center / Children’s Research Hospital / From Stanford University Medical Center / /

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gas exchange / nighttime gas exchange / magnetic resonance imaging / online version / chronic management / blood gas / medical technology / e-mail communications / et al electronic communications / secretion mobilization devices / patient support / carrier testing / spinal muscular atrophy patient advocacy groups / important assessment tools / diagnostic algorithm / stepwise algorithm / respiratory support protocols / assisted cough devices / individual working / Gas exchange monitoring / diagnostic tool / /

MedicalCondition

acute illness / neurodegenerative disease / peak cough / dysfunction / ALS / juvenile amyotrophic lateral sclerosis / amyotrophic lateral sclerosis / chronic care / Pulmonary / progressive muscular atrophy / pulmonary function testing / metabolic disorders / Spinal Muscular Atrophy Ching H. Wang / illness / pulmonary problems / Scoliosis / spinal muscular atrophy type / Ineffective cough / pulmonary natural history / pneumonia / sleep-disordered breathing / hypoventilation / spurious hyperventilation / dysphagia / pulmonary function / pulmonary functional score / pulmonary morbidity / inspiratory and expiratory muscle weakness / future spinal muscular atrophy / sleep-related hypoventilation / systemic diseases / recurrent chest infections / routine pulmonary assessment / pulmonary complications / diseases / mechanically assisted cough / 5q spinal muscular atrophy / Swallow dysfunction NREM / hypotonia / early respiratory failure / contractures / chronic management / fine tremors / disorders / deformities / neuromuscular disorders / muscular dystrophy / homozygous dysfunction / finger contractures / X-linked spinal muscular atrophy / recurrent infections / sternal depression / daytime respiratory failure / muscle weakness / muscle diseases / fasciculation / inherited motor neuron disorders / Kugelberg-Welander disease / both acute and chronic management / neuromuscular disease / difficulty coughing / juvenile spinal muscular atrophy / X-linked infantile spinal muscular atrophy / muscular atrophy / bulbar dysfunction / MS / typical Werdnig-Hoffmann disease / influenza / motor neuron disease / nocturnal hypoventilation / pulmonary working group / each spinal muscular atrophy / assisted coughing / then other motor neuron disorders / spinal muscular atrophy / disease / intercostal muscle weakness / routine cough / Patients With Spinal Muscular Atrophy / coughing / apnea / joint contractures / diaphragmatic paralysis / Pulmonary disease / unsuspected atelectasis / Werdnig-Hoffmann disease / distal spinal muscular atrophy / pulmonary group / Several later-onset motor neuron diseases / SMN-associated spinal muscular atrophy / cough / respiratory distress / genetic disorders / breathing Ineffective cough / /

MedicalTreatment

traditional medicine / immunizations / insufflation / chest wall oscillation / antibiotics / mechanical ventilation / postural drainage / chest physiotherapy / spinal surgery / /

Organization

University of Wisconsin Children’s Hospital / National Institute of Neurological Diseases and Stroke / Stanford University Medical Center / Department of Neurology and Neurological Sciences / Care Committee for Spinal Muscular Atrophy / International Coordinating Committee for Spinal Muscular Atrophy / Johns Hopkins Hospital / Cincinnati Children’s Hospital Medical Center / Children’s Research Hospital / NHS / Hammersmith Hospital / Children’s Hospital of Philadelphia / American Society of Human Genetics / University of New Mexico Health Sciences Center / Sleep & Ventilation Unit / Care Committee / Stanford / Care Committee for Spinal Muscular Atrophy Committee Formation In / /

Person

Richard S. Finkel / Enrico S. Bertini / Gene Inheritance / Anita Simonds / Mary Schroth / Anthony Trela / Leslie Morrison / Ching H. Wang / Brenda Wong / Thomas O. Crawford / Annie Aloysius / Marion Main / /

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Position

family physician / care physician / physician / pediatric neurologist / walker / neurologist / pediatrician / survey coordinator / /

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Ohio / New Mexico / California / Maryland / Pennsylvania / Massachusetts / /

Technology

x-ray / diagnostic tests / diagnostic algorithm / magnetic resonance imaging / tomography / MRI / /

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http /

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