Stroke registries in the world: a systematic review

Abstract

Background and purpose: The stroke registry with completeness and accuracy is necessary to advance reasonable and economical disease control. To seek requirements for an ideal national stroke registry in accordance with the actual situation in Japan, we did a systematic review to examine the literature to date on stroke registries in the world. Methods: In this systematic review, we searched MEDLINE and Japan Medical Abstracts Society Database (Ichushi-Web) with terms including“ stroke”,“ ischemic stroke”,“ transient ischemic attack”,“ intracerebral hemorrhage”, “subarachnoid hemorrhage”,“ registry”, and“ database” from inception to December 31, 2015 in English and Japanese; and summarized the characteristics of extracted registries. Results: We identified 1533 articles, of which 51 registries, including 38 non-Japanese and 13 Japanese registries met inclusion criteria. In terms of geographical distribution, there are more registries in Europe as compared to Africa and Asia. The number of registered cases is generally larger in registries with opt-out consent or without consent than those require written consent. Several non-Japanese registries are supported by stroke support organizations, professional organizations, and competitive public funds. Some European registries have data linkage to multiple administrative datasets, such as death registry and claim database. Conclusions: Through the review, we identified several essential factors for the ideal stroke registry in Japan, including waiver of consent, detailed data collection using both case report forms and data linkage to public health database with medical identifier, and stable funding support.