Creation and evolution of the Ontario Stroke Registry: Protocol and two decades of data from a population-based clinical stroke registry

Background — Stroke clinical registries are critical for systems planning, quality improvement, advocacy and informing policy. We describe the methodology and evolution of the Registry of the Canadian Stroke Network/Ontario Stroke Registry in Canada.

Methods — At the launch of the registry in 2001, trained coordinators prospectively identified patients with acute stroke or transient ischemic attack (TIA) at comprehensive stroke centers across Canada and obtained consent for registry participation and follow-up interviews. From 2003 onward, patients were identified from administrative databases, and consent was waived for data collection on a sample of eligible patients across all hospitals in Ontario and in one site in Nova Scotia. In the most recent data collection cycle, consecutive eligible patients were included across Ontario, but patients with TIA and those seen in the emergency department without admission were excluded.

Results — Between 2001 and 2013, the registry included 110,088 patients. Only 1,237 patients had follow-up interviews, but administrative data linkages allowed for indefinite follow-up of deaths and other measures of health services utilization. After a hiatus, the registry resumed data collection in 2019, with 13,828 charts abstracted to date with a focus on intracranial vascular imaging, identification of intracranial occlusions and treatment with thrombectomy.

Conclusion — The Registry of the Canadian Stroke Network/Ontario Stroke Registry is a large population-based clinical database that has evolved throughout the last two decades to meet contemporary stroke needs. Registry data have been used to monitor stroke quality of care and conduct outcomes research to inform policy.