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The Canadian Neuromuscular Disease Registry 2010-2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry
- Source :
- Paediatrics Publications, Journal of Neuromuscular Diseases
- Publication Year :
- 2021
- Publisher :
- Scholarship@Western, 2021.
-
Abstract
- We report the recruitment activities and outcomes of a multi-disease neuromuscular patient registry in Canada. The Canadian Neuromuscular Disease Registry (CNDR) registers individuals across Canada with a confirmed diagnosis of a neuromuscular disease. Diagnosis and contact information are collected across all diseases and detailed prospective data is collected for 5 specific diseases: Amyotrophic Lateral Sclerosis (ALS), Duchenne Muscular Dystrophy (DMD), Myotonic Dystrophy (DM), Limb Girdle Muscular Dystrophy (LGMD), and Spinal Muscular Atrophy (SMA). Since 2010, the CNDR has registered 4306 patients (1154 pediatric and 3148 adult) with 91 different neuromuscular diagnoses and has facilitated 125 projects (73 academic, 3 not-for-profit, 3 government, and 46 commercial) using registry data. In conclusion, the CNDR is an effective and productive pan-neuromuscular registry that has successfully facilitated a substantial number of studies over the past 10 years.
- Subjects :
- 0301 basic medicine
Research Report
Adult
Male
Pediatrics
medicine.medical_specialty
Canada
Registry
Neuromuscular disease
Adolescent
Duchenne muscular dystrophy
Myotonic dystrophy
Muscular Atrophy, Spinal
03 medical and health sciences
Young Adult
0302 clinical medicine
medicine
Humans
Myotonic Dystrophy
Registries
Amyotrophic lateral sclerosis
Child
real-world evidence
Aged
Aged, 80 and over
business.industry
Amyotrophic Lateral Sclerosis
Infant
Spinal muscular atrophy
Middle Aged
medicine.disease
Natural history
Muscular Dystrophy, Duchenne
030104 developmental biology
Clinical research
Neurology
Muscular Dystrophies, Limb-Girdle
natural history
Child, Preschool
Female
Neurology (clinical)
business
030217 neurology & neurosurgery
Limb-girdle muscular dystrophy
Subjects
Details
- Database :
- OpenAIRE
- Journal :
- Paediatrics Publications, Journal of Neuromuscular Diseases
- Accession number :
- edsair.doi.dedup.....5225e12fc979e2aa3b4ca1e72fb59591