Ontario Stroke Registry
The Registry of the Canadian Stroke Network (RCSN) was established in 2001 with a research grant from the Canadian Stroke Network (CSN) and Ministry of Health and Long-Term Care (MOHLTC) funds to allow for the measurement and monitoring of stroke care delivery and outcomes in Canadian patients at participating institutions. In the first two phases of the RCSN, data were collected from 21 hospitals across Canada. In 2003, data collection primarily focused on patients in Ontario and from one site in Nova Scotia.
In 2004, the RCSN became a prescribed registry under Ontario’s Personal Health Information Protection Act (PHIPA); this designation permitted the RCSN to collect data without patient consent. On November 1, 2011, ownership of the RCSN was transferred from the CSN to the Institute for Clinical Evaluative Sciences (ICES) in partnership with the Ontario Stroke Network (OSN). To reflect these changes in governance, the name was changed to the Ontario Stroke Registry (OSR). As ICES is a prescribed entity under PHIPA, the OSR continues to have the privilege of collecting data on stroke patients without informed consent.
The OSR is used for monitoring and reporting on the quality of stroke care in Ontario through the OSN, as well as other provincial initiatives such as the Stroke Quality-Based Procedures of the Ministry of Health and Long-Term Care (MOHLTC). In addition, the OSR serves as a rich clinical database for investigator-initiated research projects. Since 2012, the OSR has been funded by the CSN, OSN and MOHLTC.
Scientists primarily involved in the work of the OSR include:
Data Collection and Methodology
The OSR captures high-quality clinical data, including information on patient demographic characteristics, stroke type and severity, processes of care, hospital treatments, and complications and outcomes of patients with stroke or transient ischemic attack seen in the emergency department or admitted to a participating hospital.
Specific OSR data elements were selected after wide consultation with multiple stakeholders, including stroke survivors, clinicians (physicians, nurses and allied health workers) and representatives of the institutions and health authorities responsible for delivering care (hospitals, Regional Stroke Networks, Local Health Integration Networks and the Ontario Ministry of Health and Long-Term Care). The databases include over 400 data elements. Many of the data elements collected are used to quantify indicators of best practice stroke care, as established by the Canadian Best Practice Recommendations for Stroke Care.
The OSR currently includes data from two episodes of a stroke patient’s care:
- at first presentation to hospital with an acute stroke or TIA (the OSR Acute Stroke Databases), and
- at assessment and treatment by a secondary prevention clinic (the OSR Secondary Prevention Clinics Databases).
Both databases can be linked with a number of administrative health databases housed at ICES.
For further information on the OSR databases:
How to Access OSR Data
Researchers interested in doing a project with OSR data must first apply to the OSR for project approval. They should familiarize themselves with the OSR Publications Policy (PDF) prior to submitting their proposal. Although the OSR has a minimal amount of funding set aside for research requests, investigators wishing to work with OSR data are asked to secure their own funding to cover the analytic costs, where possible. To comply with ICES policies, an ICES scientist must be included as a co-investigator on any research project using OSR data.
To submit an OSR research data request, the following documents must be completed and sent to firstname.lastname@example.org:
An OSR-affiliated scientist will review the submission to assess project feasibility and data availability. All projects approved by the scientist will then go on to ICES for final project approval.
Quality Improvement/Evaluation Projects
Hospital administrators and staff of Local Health Integration Networks (LHINs) interested in obtaining stroke care data at the facility, LHIN or provincial level for the purposes of quality improvement must submit a written request outlining the purpose and analysis details.
To submit an OSR quality improvement/evaluation request, the following document must be completed and sent to email@example.com:
Each request will be reviewed for feasibility and data availability. Once approved, the request will be sent for analysis, and an estimated date of completion will be provided to the requestor.
Publications Using OSR Data
For any questions related to the OSR and its databases or to submit a request for data, please contact firstname.lastname@example.org.