The Genetic Epidemiology and Epidemiology of Multiple Sclerosis: How a Registry Can Provide Invaluable Data
A. Dessa Sadovnick, PhD
Department of Medical Genetics and Division of Neurology, University of British Columbia, Vancouver, Canada
Registries have been increasingly recognized as invaluable resources in the study of the pathogenesis and natural history of diseases. The type of registry can vary dramatically. The overall objective for establishing a registry often dictates its design. However, the usefulness of a registry can be hindered if it is developed in a rather short sighted way. This paper discusses the longitudinal, population based registry for the Canadian Collaborative Project on Genetic Susceptibility to MS(CCPGSMS) which began in 1993. To date, the CCPGSMS registry has clinical, demographic, genetic and family information on over 35,000 Canadian MS index cases and over 9,000 spouse controls. The paper illustrates how the important information in the registry has allowed not only specific studies but also replication cohorts. The registry database was designed to allow recontact as appropriate and thus registrants may be approached to participate in novel studoes, such as a recent project designed to test the “proof of principle for chronic cerebrospinal venous insufficiency (CCSVI) in patients with MS.