The Canadian Neuromuscular Disease Registry 2010-2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry

V Hodgkinson; J Lounsberry; S M'Dahoma; A Russell; G Jewett; T Benstead; B Brais; C Campbell; W Johnston; H Lochmüller; A McCormick; C T Nguyen; E O'Ferrall; M Oskoui; A Abrahao; H Briemberg; P R Bourque; S Botez; N Cashman; K Chapman; N Chrestian; M Crone; P Dobrowolski; S Dojeiji; J J Dowling; N Dupré; A Genge; H Gonorazky; I Grant; S Hasal; A Izenberg; S Kalra; H Katzberg; C Krieger; E Leung; G Linassi; A Mackenzie; J K Mah; A Marrero; R Massie; G Matte; L McAdam; H McMillan; M Melanson; M M Mezei; C O'Connell; G Pfeffer; C Phan; S Plamondon; C Poulin; X Rodrigue; K Schellenberg; K Selby; J Sheriko; C Shoesmith; R G Smith; M Taillon; S Taylor; S Venance; J Warman-Chardon; S Worley; L Zinman; L Korngut

doi:10.3233/JND-200538

The Canadian Neuromuscular Disease Registry 2010-2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry

J Neuromuscul Dis. 2021;8(1):53-61. doi: 10.3233/JND-200538.

Authors

V Hodgkinson¹, J Lounsberry¹, S M'Dahoma¹, A Russell¹, G Jewett¹, T Benstead², B Brais³, C Campbell⁴, W Johnston⁵, H Lochmüller^{6

7}, A McCormick⁶, C T Nguyen⁸, E O'Ferrall^{3

9}, M Oskoui^{9

10}, A Abrahao¹¹, H Briemberg^{12

13}, P R Bourque¹⁴, S Botez¹⁵, N Cashman^{12

13}, K Chapman¹³, N Chrestian¹⁶, M Crone¹⁷, P Dobrowolski⁵, S Dojeiji¹⁴, J J Dowling¹⁸, N Dupré¹⁹, A Genge⁹, H Gonorazky¹⁸, I Grant², S Hasal¹⁷, A Izenberg¹¹, S Kalra⁵, H Katzberg²⁰, C Krieger^{12

13}, E Leung²¹, G Linassi²², A Mackenzie⁶, J K Mah^{1

23}, A Marrero²⁴, R Massie^{3

9}, G Matte¹⁵, L McAdam²⁵, H McMillan⁵, M Melanson²⁶, M M Mezei¹³, C O'Connell^{27

28}, G Pfeffer^{1

29}, C Phan⁵, S Plamondon¹, C Poulin¹⁰, X Rodrigue¹⁹, K Schellenberg²², K Selby³⁰, J Sheriko³¹, C Shoesmith³², R G Smith³³, M Taillon^{27

28}, S Taylor², S Venance³², J Warman-Chardon⁷, S Worley^{27

28}, L Zinman¹¹, L Korngut¹

Affiliations

¹ Department of Clinical Neurosciences, and Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
² Division of Neurology, Dalhousie University, Halifax, Canada.
³ Montreal Neurological Institute and Hospital, Montreal, Canada.
⁴ Department of Pediatrics, Children's Health Research Institute, London Health Sciences Centre, Western University, London, Canada.
⁵ Division of Neurology, Department of Medicine, Faculty of Medicine, University of Alberta, Edmonton, Canada.
⁶ Children's Hospital of Eastern Ontario, University of Ottawa, Ottawa, Canada.
⁷ Department of Medicine, The Ottawa Hospital and Brain and Mind Research Institute, University of Ottawa, Ottawa, Canada.
⁸ CHU Sainte-Justine, Université de Montréal, Montréal, Canada.
⁹ Department of Neurosciences, McGill University, Montréal, Canada.
¹⁰ Departments of Pediatrics, Montreal Children's Hospital, McGill University, Montréal, Canada.
¹¹ Division of Neurology, Department of Medicine, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Canada.
¹² GF Strong Rehabilitation Centre, University of British Columbia, Vancouver, Canada.
¹³ Division of Neurology, Department of Medicine, Vancouver General Hospital, University of British Columbia, Vancouver, Canada.
¹⁴ Division of Physical Medicine and Rehabilitation, Department of Medicine, University of Ottawa, Ottawa, Canada.
¹⁵ Centre Hospitalier de l'Université de Montréal (CHUM), Université de Montréal, Montréal, Canada.
¹⁶ Department of Medicine, Université Laval, Quebec City, Canada, Neuroscience axis, CHU de Québec-Université Laval.
¹⁷ Division of Pediatric Neurology, Department of Neurology, University of Saskatchewan, Saskatoon, Canada.
¹⁸ Department of Pediatrics, Sick Kids Hospital, University of Toronto, Toronto, Canada.
¹⁹ Department of Medicine, Laval University, Québec City, Canada.
²⁰ University Health Network, University of Toronto, Toronto, Canada.
²¹ Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Canada.
²² Department of Physical Medicine and Rehabilitation University of Saskatchewan, Saskatoon, Canada.
²³ Department of Pediatrics, University of Calgary, Calgary, Canada.
²⁴ CHU Dr. Georges-L-Dumont, Université de Sherbrooke, Moncton, Canada.
²⁵ Department of Pediatrics, Holland Bloorview Kids Rehabilitation Hospital, Bloorview Research Institute, University of Toronto, Toronto, Canada.
²⁶ Department of Physical Medicine and Rehabilitation, Queen's University, Kingston, Canada.
²⁷ Stan Cassidy Centre for Rehabilitation, Fredericton, Canada.
²⁸ Faculty of Medicine, Dalhousie University, Halifax, Canada.
²⁹ Department of Medical Genetics, and Alberta Child Health Research Institute, University of Calgary, Calgary, Canada.
³⁰ Division of Neurology, Department of Pediatrics, BC Children's Hospital, University of Vancouver, Vancouver, Canada.
³¹ Division of Neurology, Department of Pediatrics, Dalhousie University, Halifax, Canada.
³² Division of Neurology, Clinical Neurological Sciences, Western University, London, Canada.
³³ Department of Pediatrics, KidsInclusive Centre for Child & Youth Development, Hotel Dieu Hospital, Queen's University, Kingston, Canada.

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.

Keywords: Registry; natural history; real-world evidence.

MeSH terms

Adolescent
Adult
Aged
Aged, 80 and over
Amyotrophic Lateral Sclerosis*
Canada
Child
Child, Preschool
Female
Humans
Infant
Male
Middle Aged
Muscular Atrophy, Spinal*
Muscular Dystrophies, Limb-Girdle*
Muscular Dystrophy, Duchenne*
Myotonic Dystrophy*
Registries*
Young Adult