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The Canadian Neuromuscular Disease Registry 2010-2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry.
Hodgkinson, V; Lounsberry, J; M'Dahoma, S; Russell, A; Jewett, G; Benstead, T; Brais, B; Campbell, C; Johnston, W; Lochmüller, H; McCormick, A; Nguyen, C T; O'Ferrall, E; Oskoui, M; Abrahao, A; Briemberg, H; Bourque, P R; Botez, S; Cashman, N; Chapman, K; Chrestian, N; Crone, M; Dobrowolski, P; Dojeiji, S; Dowling, J J; Dupré, N; Genge, A; Gonorazky, H; Grant, I; Hasal, S; Izenberg, A; Kalra, S; Katzberg, H; Krieger, C; Leung, E; Linassi, G; Mackenzie, A; Mah, J K; Marrero, A; Massie, R; Matte, G; McAdam, L; McMillan, H; Melanson, M; Mezei, M M; O'Connell, C; Pfeffer, G; Phan, C; Plamondon, S; Poulin, C.
Affiliation
  • Hodgkinson V; Department of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
  • Lounsberry J; Department of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
  • M'Dahoma S; Department of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
  • Russell A; Department of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
  • Jewett G; Department of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
  • Benstead T; Division of Neurology, Dalhousie University, Halifax, Canada.
  • Brais B; Montreal Neurological Institute and Hospital, Montreal, Canada.
  • Campbell C; Department of Pediatrics, Children's Health Research Institute, London Health Sciences Centre, Western University, London, Canada.
  • Johnston W; Division of Neurology, Department of Medicine, Faculty of Medicine, University of Alberta, Edmonton, Canada.
  • Lochmüller H; Children's Hospital of Eastern Ontario, University of Ottawa, Ottawa, Canada.
  • McCormick A; Department of Medicine, The Ottawa Hospital and Brain and Mind Research Institute, University of Ottawa, Ottawa, Canada.
  • Nguyen CT; Children's Hospital of Eastern Ontario, University of Ottawa, Ottawa, Canada.
  • O'Ferrall E; CHU Sainte-Justine, Université de Montréal, Montréal, Canada.
  • Oskoui M; Montreal Neurological Institute and Hospital, Montreal, Canada.
  • Abrahao A; Department of Neurosciences, McGill University, Montréal, Canada.
  • Briemberg H; Department of Neurosciences, McGill University, Montréal, Canada.
  • Bourque PR; Departments of Pediatrics, Montreal Children's Hospital, McGill University, Montréal, Canada.
  • Botez S; Division of Neurology, Department of Medicine, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Canada.
  • Cashman N; GF Strong Rehabilitation Centre, University of British Columbia, Vancouver, Canada.
  • Chapman K; Division of Neurology, Department of Medicine, Vancouver General Hospital, University of British Columbia, Vancouver, Canada.
  • Chrestian N; Division of Physical Medicine and Rehabilitation, Department of Medicine, University of Ottawa, Ottawa, Canada.
  • Crone M; Centre Hospitalier de l'Université de Montréal (CHUM), Université de Montréal, Montréal, Canada.
  • Dobrowolski P; GF Strong Rehabilitation Centre, University of British Columbia, Vancouver, Canada.
  • Dojeiji S; Division of Neurology, Department of Medicine, Vancouver General Hospital, University of British Columbia, Vancouver, Canada.
  • Dowling JJ; Division of Neurology, Department of Medicine, Vancouver General Hospital, University of British Columbia, Vancouver, Canada.
  • Dupré N; Department of Medicine, Université Laval, Quebec City, Canada, Neuroscience axis, CHU de Québec-Université Laval.
  • Genge A; Division of Pediatric Neurology, Department of Neurology, University of Saskatchewan, Saskatoon, Canada.
  • Gonorazky H; Division of Neurology, Department of Medicine, Faculty of Medicine, University of Alberta, Edmonton, Canada.
  • Grant I; Division of Physical Medicine and Rehabilitation, Department of Medicine, University of Ottawa, Ottawa, Canada.
  • Hasal S; Department of Pediatrics, Sick Kids Hospital, University of Toronto, Toronto, Canada.
  • Izenberg A; Department of Medicine, Laval University, Québec City, Canada.
  • Kalra S; Department of Neurosciences, McGill University, Montréal, Canada.
  • Katzberg H; Department of Pediatrics, Sick Kids Hospital, University of Toronto, Toronto, Canada.
  • Krieger C; Division of Neurology, Dalhousie University, Halifax, Canada.
  • Leung E; Division of Pediatric Neurology, Department of Neurology, University of Saskatchewan, Saskatoon, Canada.
  • Linassi G; Division of Neurology, Department of Medicine, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Canada.
  • Mackenzie A; Division of Neurology, Department of Medicine, Faculty of Medicine, University of Alberta, Edmonton, Canada.
  • Mah JK; University Health Network, University of Toronto, Toronto, Canada.
  • Marrero A; GF Strong Rehabilitation Centre, University of British Columbia, Vancouver, Canada.
  • Massie R; Division of Neurology, Department of Medicine, Vancouver General Hospital, University of British Columbia, Vancouver, Canada.
  • Matte G; Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Canada.
  • McAdam L; Department of Physical Medicine and Rehabilitation University of Saskatchewan, Saskatoon, Canada.
  • McMillan H; Children's Hospital of Eastern Ontario, University of Ottawa, Ottawa, Canada.
  • Melanson M; Department of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
  • Mezei MM; Department of Pediatrics, University of Calgary, Calgary, Canada.
  • O'Connell C; CHU Dr. Georges-L-Dumont, Université de Sherbrooke, Moncton, Canada.
  • Pfeffer G; Montreal Neurological Institute and Hospital, Montreal, Canada.
  • Phan C; Department of Neurosciences, McGill University, Montréal, Canada.
  • Plamondon S; Centre Hospitalier de l'Université de Montréal (CHUM), Université de Montréal, Montréal, Canada.
  • Poulin C; Department of Pediatrics, Holland Bloorview Kids Rehabilitation Hospital, Bloorview Research Institute, University of Toronto, Toronto, Canada.
J Neuromuscul Dis ; 8(1): 53-61, 2021.
Article de En | MEDLINE | ID: mdl-32925088
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.
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Texte intégral: 1 Collection: 01-internacional Base de données: MEDLINE Sujet principal: Amyotrophie spinale / Enregistrements / Myopathie de Duchenne / Dystrophies musculaires des ceintures / Sclérose latérale amyotrophique / Dystrophie myotonique Limites: Adolescent / Adult / Aged / Aged80 / Child / Child, preschool / Female / Humans / Infant / Male Pays/Région comme sujet: America do norte Langue: En Journal: J Neuromuscul Dis Année: 2021 Type de document: Article Pays d'affiliation: Canada
Texte intégral
Ajouter à My VHL
Imprimer
XML
PubMed Links
Recherche sur Google

Texte intégral: 1 Collection: 01-internacional Base de données: MEDLINE Sujet principal: Amyotrophie spinale / Enregistrements / Myopathie de Duchenne / Dystrophies musculaires des ceintures / Sclérose latérale amyotrophique / Dystrophie myotonique Limites: Adolescent / Adult / Aged / Aged80 / Child / Child, preschool / Female / Humans / Infant / Male Pays/Région comme sujet: America do norte Langue: En Journal: J Neuromuscul Dis Année: 2021 Type de document: Article Pays d'affiliation: Canada