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How does the Global Registry work?
National SMA/DMD registry National SMA/DMD registry National SMA/DMD registry National SMA/DMD registry Clinician Entered Patient Entered Or a combination Global Registry National SMA/DMD registry curation National SMA/DMD registry National SMA/DMD registry National SMA/DMD registry
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Highly Encouraged items
DMD Mandatory SMA Mandatory Personal Data Sex, Name, contact, DOB Involvement in clinical trials Genetic Test Results Mutation name following HGVS rules Clinical diagnosis Wheelchair Use Ambulation Status / Best motor function Scoliosis Surgery Personal Data Sex, Name, contact, DOB Involvement in clinical trials Genetic Test Results Mutation name following HGVS rules Clinical diagnosis Wheelchair Use Ambulation Status / Best motor function Scoliosis Surgery Global Registry Steroid status Cardiac medication use Gastric / nasal feeding Cardiac Ventilation Status / Pulmonary Family History Sitting without support Muscle Biopsy Other registry Family History Pulmonary Function Ventilation Status SMA Classification SMN 2 Copies Other registry Highly Encouraged items
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Global registry enquiries
Enquiry received from industry or academia National SMA/DMD registry National SMA/DMD registry National SMA/DMD registry National SMA/DMD registry TGDOC Vote Global Registry National SMA/DMD registry National SMA/DMD registry National SMA/DMD registry National SMA/DMD registry TREAT-NMD requests Data National registry returns Data
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