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

Table 3 International aspects of electronic registries for patients with 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

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.

ISSN: 1471-2377