The Canadian Neuromuscular Disease Registry 2010–2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry
Victoria Hodgkinson, Josh Lounsberry, Saïd M’Dahoma, Alyce Russell, Gordon Jewett, Timothy Benstead, Bernard Brais, Craig Campbell, Wendy Johnston, Hanns Lochmüller, Anna McCormick, Cam-Tu Nguyen, Erin O’Ferrall, Maryam Oskoui, Agessandro Abrahão, Hannah Briemberg, Pierre R. Bourque, Stéphan A. Botez, Neil R. Cashman, Kristine Chapman, Nicolas Chrestian, M. Crone, Peter Dobrowolski, Sue Dojeiji, James J. Dowling, Nicolas Dupré, Angela Genge, Hernán Gonorazky, Ian Grant, Simona Hasal, Aaron Izenberg, Sanjay Kalra, Hans Katzberg, Charles Krieger, Edward Leung, Gary Linassi, Alex MacKenzie, Jean K. Mah, A Marrero, Rami Massie, Geneviève Matte, Laura McAdam, Hugh J. McMillan, Michel Melanson, M Mezei, Colleen O’Connell, Gerald Pfeffer, Cecile Phan, Stephanie Plamondon, Chantal Poulin, Xavier Rodrigue, Kerri Schellenberg, Kathryn Selby, Jordan Sheriko, C. Shoesmith, Ronald G. Smith, Mario Taillon, Stuart A. Taylor, Shannon L. Venance, Jodi Warman‐Chardon, Scott Worley, Lorne Zinman, Lawrence Korngut
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.