Journal on Developmental Disabilities
Le journal sur les handicaps du développement

Abstract

In 2000, the Down Syndrome Research Foundation initiated the formation of a Canadian voluntary population registry. The purpose of this article is to describe the background, development, and implementation of the pilot study for this registry. The pilot study collected responses to specific questions from participating families from across Canada, with a view to determining the feasibility of using both paper and web-based questionnaires for collecting the data. Though preliminary, these results indicate that families are interested in being part of the registry and its accompanying research. This registry, once established, could be useful as an access point for further research.

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