Hostname: page-component-8448b6f56d-qsmjn Total loading time: 0 Render date: 2024-04-19T10:43:04.797Z Has data issue: false hasContentIssue false
  • English
  • Français

Establishing a Canadian Registry of Patients with Amyotrophic Lateral Sclerosis

Published online by Cambridge University Press:  23 September 2014

L. Korngut ,
A. Genge ,
M. Johnston ,
T. Benstead ,
P. Bourque ,
H. Briemberg ,
A. Casey ,
M. D'Amour ,
N. Dupré  and
D. Figlewicz
...Show all authors
L. Korngut*
Affiliation:
Department of Clinical Neurosciences, Hotchkiss Brain Institute, University of Calgary, Calgary
A. Genge
Affiliation:
ALS Program, Montreal Neurological Institute and Hospital, Montreal
M. Johnston
Affiliation:
Department of Clinical Neurosciences, Hotchkiss Brain Institute, University of Calgary, Calgary
T. Benstead
Affiliation:
Division of Neurology, Dalhousie University, Halifax, Nova Scotia
P. Bourque
Affiliation:
Division of Neurology, University of Ottawa, Ottawa
H. Briemberg
Affiliation:
Division of Neurology, University of British Columbia, Vancouver, British Columbia
A. Casey
Affiliation:
Section of Physical Medicine and Rehabilitation, University of Manitoba, Winnipeg, Manitoba
M. D'Amour
Affiliation:
Department of Neurology, Hopital Notre-Dame, Centre Hospitalier Universitaire de Montreal, Montreal
N. Dupré
Affiliation:
Department of Neurological Scnience, CHA-Enfant-Jésus, Laval University, Quebec City, Quebec
D. Figlewicz
Affiliation:
ALS Society of Canada, Sunnybrook Health Sciences Centre, Toronto, Ontario
W. Hader
Affiliation:
Department of Physical Medicine and Rehabilitation, University of Saskatchewan, Saskatoon, Saskatchewan, Canada
W. Johnston
Affiliation:
Division of Neurology, University of Alberta, Edmonton, Alberta
S. Kalra
Affiliation:
Division of Neurology, University of Alberta, Edmonton, Alberta
C. O'Connell
Affiliation:
Stan Cassidy Centre for Rehabilitation, Fredricton, New Brunswick
G. Rouleau
Affiliation:
Universite de Montreal and Research Centre, Hospitalier Universitaire Sainte-Justine, Montreal
J. Wee
Affiliation:
Department of Clinical Neurosciences, Hotchkiss Brain Institute, University of Calgary, Calgary
L. Zinman
Affiliation:
Department of Medicine, Sunnybrook Health Sciences Centre, Toronto, Ontario
*
Clinical Neurosciences, South Health Campus, 4448 Front Street SE, Calgary, Alberta, T3M 1M4, Canada. Email: korngut@gmail.com
Rights & Permissions [Opens in a new window]

Abstract:

Core share and HTML view are not available for this content. However, as you have access to this content, a full PDF is available via the ‘Save PDF’ action button.
Background:

Amyotrophic lateral sclerosis (ALS) is a devastating cause of progressive weakness, respiratory failure and death. To date there is no effective therapy to meaningfully extend survival but continuously emerging targets and putative treatments are studied in clinical trials. Canadian epidemiological data on ALS is scarce and the socioeconomic impact of ALS on Canadian society is unclear. The Canadian Neuromuscular Disease Registry (CNDR) is a national clinic-based registry of patients with neuromuscular diseases with the goal of facilitating the design and execution of clinical research.

Methods:

We conducted a national stakeholder survey to assess interest for a Canadian ALS registry and an assessment of expected case ascertainment. A dataset derivation meeting was held to establish the registry medical dataset.

Results:

We report the results of the national stakeholder survey, case ascertainment assessment, and the derived dataset that have resulted in the current implementation of a Canadian registry of patients with ALS.

Conclusions:

The development of this long sought-after resource is a significant step forward for the Canadian ALS patient and research communities that will result in more efficient clinical trial recruitment and advancements in our understanding of ALS in Canada.

Type
Original Article
Information
Canadian Journal of Neurological Sciences , Volume 40 , Issue 1 , January 2013 , pp. 29 - 35
Copyright
Copyright © The Canadian Journal of Neurological 2013

References

1. Johnston, CA, Stanton, BR, Turner, MR, et al. Amyotrophic lateral sclerosis in an urban setting: a population based study of inner city London. J Neurol. 2006; 253(12):1642–3.Google Scholar
2. Zinman, L, Cudkowicz, M. Emerging targets and treatments in amyotrophic lateral sclerosis. Lancet Neurol. 2011;10(5): 481–90.Google Scholar
3. Beghi, E, Pupillo, E, Zoccolella, S, European Amyotrophic Lateral Sclerosis Consortium (EURALS). 148th ENMC international workshop on the scientific contributions of the EURALS consortium on amyotrophic lateral sclerosis. Neuromuscul Disord. 2009;19(5):379–81.CrossRefGoogle Scholar
4. Sherman, A, Bowser, R, Grasso, D, et al. Proposed BioRepository platform solution for the ALS research community. Amyotroph Lateral Scler. 2010;12(1):11–16.CrossRefGoogle ScholarPubMed
5. Thompson, R, Schoser, B, Monckton, DG, Blonsky, K, Lochmüller, H. Patient Registries and Trial Readiness in Myotonic Dystrophy-TREAT-NMD/Marigold International Workshop Report. Neuromuscul Disord. 2009;19(12):860.Google Scholar
6. Bushby, K, Lynn, S, Straub, T, TREAT-NMD Network. Collaborating to bring new therapies to the patient-the TREAT-NMD model. Acta Myol. 2009 July;28(1):12–15.Google Scholar
7. Sárközy, A, Bushby, K, Béroud, C, Lochmüller, H. 157th ENMC International Workshop: patient registries for rare, inherited muscular disorders 25-27 January 2008 Naarden, The Netherlands. Neuromuscul Disord. 2008;18(12):997–1001.Google Scholar
8. Dreyer, NA, Garner, S. Registries for robust evidence. JAMA. 2009; 302(7):790–1.Google Scholar
9. Donaghy, C, Clarke, J, Patterson, C, Kee, F, Hardiman, O, Patterson, V. The epidemiology of motor neuron disease in Northern Ireland using capture-recapture methodology. Amyotroph Lateral Scler. 2010;11(4):374–8.Google Scholar
10. Byrne, S, Walsh, C, Lynch, C, et al. Rate of familial amyotrophic lateral sclerosis: a systematic review and meta-analysis. J Neurol Neurosurg Psychiatry. 2011;82(6):623–7.Google Scholar
11. Canadian socioeconomic database from Statistics Canada (CANSIM) 2011[homepage on the internet]. Ottawa, Ontario: Statistics Canada. 2011 [cited 2011 July 1]. Available from: http://www5.statcan.gc.ca/cansim/home-accueil?lang=eng Google Scholar
12. Wolfson, C, Kilborn, S, Oskoui, M, Genge, A. Incidence and prevalence of amyotrophic lateral sclerosis in Canada: a systematic review of the literature. Neuroepidemiology. 2009;33 (2):79–88.CrossRefGoogle Scholar
13. Fink, A, Kosecoff, J, Chassin, M, Brook, RH. Consensus methods: characteristics and guidelines for use. Am J Public Health. 1984; 74:979–83.Google Scholar