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Table 3 International aspects of electronic registries for patients with motor neuron diseases

From: National registry for amyotrophic lateral sclerosis: a systematic review for structuring population registries of motor neuron diseases

Register Inte Data capture Self-registration Data model Patients’ recruitment Disease
American register [33] Yes Web system Yes Not specified Personal identification and database search ALS
Canadian Neuromuscular Disease Registry (CNDR) [34] No Web system No TREAT-NMD Patients from affiliated clinics DMD, DM, SMA e LGMD
Italian neuromuscular registry [35] Yes Web system and clinical interview Yes TREAT-NMD Platform’s disclosure and patients from clinics DMD, BMD, SMA, CMT, MGSD, SBMA e TTR - FAP
NeuroMuscular ObserVational Research (MOVR) [36] No Visit to the MDA Care Center No Not specified Medical indication ALS, SMA, DMD e BMD
Swedish motor neuron disease quality registry [37] No Web system Yes Medical consensus Analysis of hospital records ALS
New Zealand Motor Neurone Disease Registry (NZ MND) [44] No Web system No AMNDR Registry disclosure, advertisements, and medical indication MND
  1. Abbreviations: Inte = Interoperability, Cap. Dados = Captura dos dados, TREAT-NMD = Translational Research in Europe for the Assessment and Treatment of Neuromuscular Disease, AMNDR = Australian Motor Neurone Disease Registry, EUReMS = European Register for Multiple Sclerosis, ASL = Amyotrophic Lateral Sclerosis, DMD = Duchenne muscular dystrophy, SMA = Spinal Muscular Atrophy, CMT = Charcot-Marie-Tooth disease, BMD = Becker Muscular Dystrophy, MGSD = Muscle Glycogenoses, SBMA = Spinal-Bulbar Muscular Atrophy, TTR-FAP = Transthyretin-related familial amyloid polyneuropathy, DM = Myotonic Dystrophy, LGMD = Limb-Girdle Muscular Dystrophy, CNDR = Canadian Neuromuscular Disease Registry.