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Establishing a Canadian Registry of Patients with Amyotrophic Lateral Sclerosis

  • L. Korngut (a1), A. Genge (a2), M. Johnston (a1), T. Benstead (a3), P. Bourque (a4), H. Briemberg (a5), A. Casey (a6), M. D'Amour (a7), N. Dupré (a8), D. Figlewicz (a9), W. Hader (a10), W. Johnston (a11), S. Kalra (a11), M. Melanson, C. O'Connell (a12), G. Rouleau (a13), C. Shoesmith, J. Wee (a1) and L. Zinman (a14)...

Abstract:

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.

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Copyright

Corresponding author

Clinical Neurosciences, South Health Campus, 4448 Front Street SE, Calgary, Alberta, T3M 1M4, Canada. Email: korngut@gmail.com

References

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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.
2. Zinman, L, Cudkowicz, M. Emerging targets and treatments in amyotrophic lateral sclerosis. Lancet Neurol. 2011;10(5): 481–90.
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.
4. Sherman, A, Bowser, R, Grasso, D, et al. Proposed BioRepository platform solution for the ALS research community. Amyotroph Lateral Scler. 2010;12(1):1116.
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.
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):1215.
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):9971001.
8. Dreyer, NA, Garner, S. Registries for robust evidence. JAMA. 2009; 302(7):790–1.
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.
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.
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
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):7988.
13. Fink, A, Kosecoff, J, Chassin, M, Brook, RH. Consensus methods: characteristics and guidelines for use. Am J Public Health. 1984; 74:979–83.

Establishing a Canadian Registry of Patients with Amyotrophic Lateral Sclerosis

  • L. Korngut (a1), A. Genge (a2), M. Johnston (a1), T. Benstead (a3), P. Bourque (a4), H. Briemberg (a5), A. Casey (a6), M. D'Amour (a7), N. Dupré (a8), D. Figlewicz (a9), W. Hader (a10), W. Johnston (a11), S. Kalra (a11), M. Melanson, C. O'Connell (a12), G. Rouleau (a13), C. Shoesmith, J. Wee (a1) and L. Zinman (a14)...

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