ArticleJournal of neuromuscular diseases2021
The Canadian Neuromuscular Disease Registry 2010-2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry.
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Article in Journal of neuromuscular diseases, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers.
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16citing papers in PubMed
–field-weighted citation impact
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed.
- Implementation of a neuromuscular clinical trial network: a rare disease model for enhancing clinical trial readiness, capacity, and access in Canada.Orphanet journal of rare diseases · 2026Article
- Review: Limb-girdle muscular dystrophies (LGMDs) existing registries and natural history studies: Where do we stand?Journal of neuromuscular diseases · 2026Review
- REGISTRE SMA FRANCE: A nationwide observational registry of patients with spinal muscular atrophy in France.Journal of neuromuscular diseases · 2025Observational
- Assessing the socio-economic burden of inherited and inflammatory neuromuscular diseases (BIND study): a study protocol.Orphanet journal of rare diseases · 2025Article
- A state-of-the-art review of registries in spinal muscular atrophy: A valuable resource for clinical research.Journal of neuromuscular diseases · 2025Review
- Observational
- The Dutch Dystrophinopathy Database: A National Registry with Standardized Patient and Clinician Reported Real-World Data.Journal of neuromuscular diseases · 2024Article
- Asynchronous online focus groups for research with people living with amyotrophic lateral sclerosis and family caregivers: usefulness, acceptability and lessons learned.BMC medical research methodology · 2023Article
- Treatment of spinal muscular atrophy with Onasemnogene Abeparvovec in Switzerland: a prospective observational case series study.BMC neurology · 2023Observational
- Covid-19 threat and coping: application of protection motivation theory to the pandemic experiences of people affected by amyotrophic lateral sclerosis.BMC neurology · 2022Article
- Community Consensus Guidelines to Support FAIR Data Standards in Clinical Research Studies in Primary Mitochondrial Disease.Advanced genetics (Hoboken, N.J.) · 2022Article
- The Italian National Registry for FSHD: an enhanced data integration and an analytics framework towards Smart Health Care and Precision Medicine for a rare disease.Orphanet journal of rare diseases · 2021Article
- Disease monitoring programs of rare genetic diseases: transparent data sharing between academic and commercial stakeholders.Orphanet journal of rare diseases · 2021Article
- A Descriptive Review of Global Real World Evidence Efforts to Advance Drug Discovery and Clinical Development in Amyotrophic Lateral Sclerosis.Frontiers in neurology · 2021Review
- Genotype-Phenotype Correlations in Duchenne and Becker Muscular Dystrophy Patients from the Canadian Neuromuscular Disease Registry.Journal of personalized medicine · 2020Article
- Could an outcome-based agreement be operationalized using real-world data from the Canadian Neuromuscular Disease Registry? Perspectives from an expert-led assessment in spinal muscular atrophy.Therapeutic advances in rare diseaseArticle
Corrections and comments
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Authors and funding
63 authors.
V HodgkinsonDepartment of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
J LounsberryDepartment of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
S M'DahomaDepartment of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
A RussellDepartment of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
G JewettDepartment of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
T BensteadDivision of Neurology, Dalhousie University, Halifax, Canada.
B BraisMontreal Neurological Institute and Hospital, Montreal, Canada.
C CampbellDepartment of Pediatrics, Children's Health Research Institute, London Health Sciences Centre, Western University, London, Canada.
W JohnstonDivision of Neurology, Department of Medicine, Faculty of Medicine, University of Alberta, Edmonton, Canada.
H LochmüllerChildren's Hospital of Eastern Ontario, University of Ottawa, Ottawa, Canada.
A McCormickChildren's Hospital of Eastern Ontario, University of Ottawa, Ottawa, Canada.
C T NguyenCHU Sainte-Justine, Université de Montréal, Montréal, Canada.
E O'FerrallMontreal Neurological Institute and Hospital, Montreal, Canada.
M OskouiDepartment of Neurosciences, McGill University, Montréal, Canada.
A AbrahaoDivision of Neurology, Department of Medicine, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Canada.
H BriembergGF Strong Rehabilitation Centre, University of British Columbia, Vancouver, Canada.
P R BourqueDivision of Physical Medicine and Rehabilitation, Department of Medicine, University of Ottawa, Ottawa, Canada.
S BotezCentre Hospitalier de l'Université de Montréal (CHUM), Université de Montréal, Montréal, Canada.
N CashmanGF Strong Rehabilitation Centre, University of British Columbia, Vancouver, Canada.
K ChapmanDivision of Neurology, Department of Medicine, Vancouver General Hospital, University of British Columbia, Vancouver, Canada.
N ChrestianDepartment of Medicine, Université Laval, Quebec City, Canada, Neuroscience axis, CHU de Québec-Université Laval.
M CroneDivision of Pediatric Neurology, Department of Neurology, University of Saskatchewan, Saskatoon, Canada.
P DobrowolskiDivision of Neurology, Department of Medicine, Faculty of Medicine, University of Alberta, Edmonton, Canada.
S DojeijiDivision of Physical Medicine and Rehabilitation, Department of Medicine, University of Ottawa, Ottawa, Canada.
J J DowlingDepartment of Pediatrics, Sick Kids Hospital, University of Toronto, Toronto, Canada.
N DupréDepartment of Medicine, Laval University, Québec City, Canada.
A GengeDepartment of Neurosciences, McGill University, Montréal, Canada.
H GonorazkyDepartment of Pediatrics, Sick Kids Hospital, University of Toronto, Toronto, Canada.
I GrantDivision of Neurology, Dalhousie University, Halifax, Canada.
S HasalDivision of Pediatric Neurology, Department of Neurology, University of Saskatchewan, Saskatoon, Canada.
A IzenbergDivision of Neurology, Department of Medicine, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Canada.
S KalraDivision of Neurology, Department of Medicine, Faculty of Medicine, University of Alberta, Edmonton, Canada.
H KatzbergUniversity Health Network, University of Toronto, Toronto, Canada.
C KriegerGF Strong Rehabilitation Centre, University of British Columbia, Vancouver, Canada.
E LeungDepartment of Pediatrics and Child Health, University of Manitoba, Winnipeg, Canada.
G LinassiDepartment of Physical Medicine and Rehabilitation University of Saskatchewan, Saskatoon, Canada.
A MackenzieChildren's Hospital of Eastern Ontario, University of Ottawa, Ottawa, Canada.
J K MahDepartment of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
A MarreroCHU Dr. Georges-L-Dumont, Université de Sherbrooke, Moncton, Canada.
R MassieMontreal Neurological Institute and Hospital, Montreal, Canada.
G MatteCentre Hospitalier de l'Université de Montréal (CHUM), Université de Montréal, Montréal, Canada.
L McAdamDepartment of Pediatrics, Holland Bloorview Kids Rehabilitation Hospital, Bloorview Research Institute, University of Toronto, Toronto, Canada.
H McMillanDivision of Neurology, Department of Medicine, Faculty of Medicine, University of Alberta, Edmonton, Canada.
M MelansonDepartment of Physical Medicine and Rehabilitation, Queen's University, Kingston, Canada.
M M MezeiDivision of Neurology, Department of Medicine, Vancouver General Hospital, University of British Columbia, Vancouver, Canada.
C O'ConnellStan Cassidy Centre for Rehabilitation, Fredericton, Canada.
G PfefferDepartment of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
C PhanDivision of Neurology, Department of Medicine, Faculty of Medicine, University of Alberta, Edmonton, Canada.
S PlamondonDepartment of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
C PoulinDepartments of Pediatrics, Montreal Children's Hospital, McGill University, Montréal, Canada.
X RodrigueDepartment of Medicine, Laval University, Québec City, Canada.
K SchellenbergDepartment of Physical Medicine and Rehabilitation University of Saskatchewan, Saskatoon, Canada.
K SelbyDivision of Neurology, Department of Pediatrics, BC Children's Hospital, University of Vancouver, Vancouver, Canada.
J SherikoDivision of Neurology, Department of Pediatrics, Dalhousie University, Halifax, Canada.
C ShoesmithDivision of Neurology, Clinical Neurological Sciences, Western University, London, Canada.
R G SmithDepartment of Pediatrics, KidsInclusive Centre for Child & Youth Development, Hotel Dieu Hospital, Queen's University, Kingston, Canada.
M TaillonStan Cassidy Centre for Rehabilitation, Fredericton, Canada.
S TaylorDivision of Neurology, Dalhousie University, Halifax, Canada.
S VenanceDivision of Neurology, Clinical Neurological Sciences, Western University, London, Canada.
J Warman-ChardonDepartment of Medicine, The Ottawa Hospital and Brain and Mind Research Institute, University of Ottawa, Ottawa, Canada.
S WorleyStan Cassidy Centre for Rehabilitation, Fredericton, Canada.
L ZinmanDivision of Neurology, Department of Medicine, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Canada.
L KorngutDepartment of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
Funding
No grant is acknowledged in the PubMed record.
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.
Indexed as
Amyotrophic Lateral SclerosisMuscular Atrophy, SpinalMuscular Dystrophies, Limb-GirdleMuscular Dystrophy, DuchenneMyotonic DystrophyRegistriesAdolescentAdultAgedAged, 80 and overCanadaChildChild, PreschoolFemaleHumansInfantnatural historyreal-world evidenceRegistry
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Registered trials
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.