Evaluation of neurological patient registries.

in the number of national as well as international registries for a variety of neurological conditions, with corresponding increase in the amount of publications arising from these efforts [ref]. The registries were established for determining the natural history of a specific disease, the effectiveness of new treatments, the quality of care and/or other patient-related outcomes. The purpose of this chapter is to provide an approach to registry evaluation and quality assessment. In preparation of this chapter, we reviewed current literature and consensus guidelines on registry evaluations. We also consulted with medical experts and registry/database specialists as part of a national registry meeting to provide feedback and consensus on criteria to be used for evaluation of disease registries in Canada.