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The Canadian Neuromuscular Disease Registry 2010–2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry
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...
| Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
IOS Press
2021
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7902956/ https://www.ncbi.nlm.nih.gov/pubmed/32925088 http://dx.doi.org/10.3233/JND-200538 |
| _version_ | 1783654640053649408 |
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| author | 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. Rodrigue, X. Schellenberg, K. Selby, K. Sheriko, J. Shoesmith, C. Smith, R.G. Taillon, M. Taylor, S. Venance, S. Warman-Chardon, J. Worley, S. Zinman, L. Korngut, L. |
| author_facet | 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. Rodrigue, X. Schellenberg, K. Selby, K. Sheriko, J. Shoesmith, C. Smith, R.G. Taillon, M. Taylor, S. Venance, S. Warman-Chardon, J. Worley, S. Zinman, L. Korngut, L. |
| author_sort | Hodgkinson, V. |
| collection | PubMed |
| description | 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. |
| format | Online Article Text |
| id | pubmed-7902956 |
| institution | National Center for Biotechnology Information |
| language | English |
| publishDate | 2021 |
| publisher | IOS Press |
| record_format | MEDLINE/PubMed |
| spelling | pubmed-79029562021-03-09 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. Rodrigue, X. Schellenberg, K. Selby, K. Sheriko, J. Shoesmith, C. Smith, R.G. Taillon, M. Taylor, S. Venance, S. Warman-Chardon, J. Worley, S. Zinman, L. Korngut, L. J Neuromuscul Dis Research Report 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. IOS Press 2021-01-01 /pmc/articles/PMC7902956/ /pubmed/32925088 http://dx.doi.org/10.3233/JND-200538 Text en © 2021 – The authors. Published by IOS Press https://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) License (https://creativecommons.org/licenses/by-nc/4.0/) , which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. |
| spellingShingle | Research Report 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. Rodrigue, X. Schellenberg, K. Selby, K. Sheriko, J. Shoesmith, C. Smith, R.G. Taillon, M. Taylor, S. Venance, S. Warman-Chardon, J. Worley, S. Zinman, L. Korngut, L. The Canadian Neuromuscular Disease Registry 2010–2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry |
| title | The Canadian Neuromuscular Disease Registry 2010–2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry |
| title_full | The Canadian Neuromuscular Disease Registry 2010–2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry |
| title_fullStr | The Canadian Neuromuscular Disease Registry 2010–2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry |
| title_full_unstemmed | The Canadian Neuromuscular Disease Registry 2010–2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry |
| title_short | The Canadian Neuromuscular Disease Registry 2010–2019: A Decade of Facilitating Clinical Research Througha Nationwide, Pan-NeuromuscularDisease Registry |
| title_sort | canadian neuromuscular disease registry 2010–2019: a decade of facilitating clinical research througha nationwide, pan-neuromusculardisease registry |
| topic | Research Report |
| url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7902956/ https://www.ncbi.nlm.nih.gov/pubmed/32925088 http://dx.doi.org/10.3233/JND-200538 |
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