The Ontario Stroke Registry (OSR) (formerly the Registry of the Canadian Stroke Network (RCSN)) was established in 2001 to allow for the measurement and monitoring of stroke care delivery and outcomes in Canadian patients at participating institutions, and to serve as a rich clinical database for investigator-initiated research projects. The RCSN is funded by the Canadian Stroke Network and the Ontario Ministry of Health. In 2011, the governance of the RCSN was transferred from the Canadian Stroke Network to the Insititue for Clinical Evaluative Sciences and the name of the registry was changed to the Ontario Stroke Registry (OSR).
Canadian Stroke Network
The Canadian Stroke Network (CSN) was established in 1999 as one of Canada’s Networks of Centres of Excellence. The mission of the CSN is to reduce the impact of stroke on Canadians through collaborations that create valuable new knowledge in stroke; to ensure the best knowledge is applied; and to build Canadian capacity in stroke. One of the inaugural projects was to develop a national stroke registry to monitor stroke patient processes and outcomes of care.
Institute for Clinical Evaluative Sciences
Since 1992, the Institute for Evaluative Sciences (ICES), has played a key role in providing unique scientific insights to help policymakers, managers, planners, practitioners and other researchers shape the future direction of the Ontario health care system. Our unbiased, evidence-based knowledge and recommendations, profiled in atlases, investigative reports, and peer-reviewed journals, are used to guide decision-making and inform changes in health care delivery.
Privacy and Data Security
The RCSN initially required informed patient consent for complete data collection and follow up interviews. However, this proved to be costly and resulted in a non-representative sample of patients This finding was of great importance in informing the debate around the need for patient consent for participation in clinical registries and anonymous databases. As a result of this finding, many jurisdictions now waive the requirement for informed consent for these purposes. In 2005, the RCSN became a “prescribed entity” under Ontario’s Personal Health Information Protection Act (PHIPA), permitting the collection of patient data without consent for the purposes of improving the provision of stroke care. Since coming under the governance of the Institute for Clinical Evaluative Sciences (ICES) in 2011, the Ontario Stroke Registry is no longer a "prescribed person" as the OSA comes under ICES's status in PHIPA of a "prescribed entity".
Methodology
All consecutive patients with a presumed diagnosis of acute stroke or Transient ischemic attack (TIA) (including ischemic stroke, intracerebral hemorrhage, and subarachnoid hemorrhage) presenting within 14 days of stroke onset to a participating hospital are included in the registry. Case ascertainment is achieved prospectively by having dedicated nurse-coordinators keep daily logs of all new stroke / TIA admissions and emergency visits. Following hospital discharge, the study nurse reviews the patient’s chart and enters the data into a touchscreen notebook computer using specialized software designed to increase data completeness and accuracy. Stripped of personal identifiers, encrypted data are then sent for analysis via telephone to a central data server at the Institute for Clinical Evaluative Sciences in Toronto (ICES).
The content of the RCSN was decided after a series of meetings with many stakeholders including researchers; representatives from ministries of health and nonprofit stroke agencies (including the Heart and Stroke Foundation of Canada); healthcare providers; and stroke survivors. The collected data focus on time intervals between stroke onset and the delivery of care including thrombolysis, and include information on patient demographics, stroke type, stroke risk factors, premorbid conditions, stroke severity, brain imaging, treatments (including medications), and the utilization of stroke protocols/units.
RCSN - Stroke Audits
Given that the data are collected from a select group of hospitals, a significant limitation of the RCSN is that the results may not be generalizable to the entire population of patients with acute stroke. To obtain population-based stroke data, a supplemental data collection is undertaken biannually — the Ontario Stroke Audit (OSA). Using the RCSN case record form and software, the OSA collected data on a random sample of all stroke and TIA patients presenting to all acute care hospitals in Ontario. Cases are determined retrospectively using appropriate International Classification of Disease (ICD), 10th revision, Clinical Modification diagnostic codes for stroke (I60, I61, I63, I64, and G45, excluding G45.4).
RCSN - SPIRIT
SPIRIT (Stroke Performance Indicators for Reporting, Improvement & Translation), is a web-based RCSN Stroke Registry that enables stroke-care providers the opportunity to enter data on stroke patients at the point of care in a timely manner. Data is securely transmitted to a central data repository for analysis and feedback. The data is used to determine stroke care performance in real-time so that hospitals can monitor their own performance and compare themselves to other institutions. The current SPIRIT module focuses on collecting data from Stroke Prevention Clinics and, in development, is the Acute Care SPIRIT module that will allow sites to enter data on their acute stroke patients including patients treated with Telestroke. All data elements included in SPIRIT were derived from the Canadian Stroke Quality of Care Study and the Stroke Canada Optimization of Rehabilitation through Evidence project, which identified performance measures through a series of national consensus panels on stroke care delivery across parts of the continuum (acute care, secondary prevention, rehabilitation, telestroke).
By linking the data elements collected by SPIRIT to performance measures, continuous evaluation of provincial and national stroke care initiatives can occur. The data collected by SPIRIT can be used to inform stroke teams, administrators, provincial ministries of Health and other stakeholders to improve the quality of stroke care delivery. It will also facilitate coordination of knowledge translation and quality improvement projects across Canada.