Canadian Stroke Network - CSN

National Stroke Registry a valuable tool for treating strokes

Each year, approximately 50,000 Canadians suffer a stroke, or "brain attack," that can lead to death or serious disability. Many survivors face physical and mental challenges that greatly affect their quality of life, as well as that of their families. The costs, both financial and social, are high.

Thanks to the Canadian Stroke Network (CSN), a Network of Centres of Excellence, healthcare professionals and policy makers have a new tool that will help researchers learn how to better prevent stroke and treat stroke patients. The Registry of the Canadian Stroke Network (RCSN), a first-ever national stroke database, will allow them to monitor and evaluate all stages of stroke treatment and draw a clearer picture of the quality of healthcare services across Canada.

"To better understand how stroke care is provided across Canada, we need a better grasp of the types of stroke patients, the risk factors associated with them, the severity of different types of strokes, the type of care given, and outcome of the patients," says Dr. Frank Silver, co-principle investigator of the RCSN. "In a nutshell, the Registry is a massive attempt to collect comprehensive and detailed information on all aspects of the patient's stroke and the care they received, including socio-economic factors, medications, other illnesses, family history, tests and treatments received, ¾ factors that may be relevant to the patient's outcome."

Data is collected at 21 participating centres across Canada. Each centre is equipped with a laptop that has a very sophisticated database. Specially trained nurses capture data on all stroke patients, from the time they arrive at emergency to when they leave the hospital. Researchers also contact patients at set intervals after their hospital stay to determine their level of disability and quality of life. All data flow directly to the main database at the Institute of Clinical Evaluative Services in Toronto.

The CSN hopes that data will be collected on up to 6,000 patients a year for 5 to 10 years.

The Registry will be connected to a Web site that has a public side and an investigator side. Investigators can access such data on length of stay, complication rates, mortality, efficiency of therapy, and outcomes ¾ not just survival, but quality of life. With this information, they can compare outcomes based on the different levels of care. They can also give feedback on this information to individual hospitals, something hospitals don't normally get themselves.

The Web site also informs the public about the latest developments in stroke care, and reassures patients that their data is secure and that they are doing something to help.

"The Registry will also act as a springboard for clinical trials on best treatments," says Dr. Silver. "It will lead to a number of spin-off projects, facilitate the entry of patients into various studies, and improve our ability to do clinical trials in Canada."

"We have gone to great lengths to ensure not only the accuracy, but the security and anonymity, of the information," emphasizes Dr. Silver.
All data is completely anonymous and secure, stripped of all "personal identifiers" (name, address, telephone number), and is exchanged through secure telephone lines, not over the Internet. When matching information, researchers will only get the results of an analysis; they will never see individual records, so individual patients are kept completely anonymous. In addition, each patient participating in the survey must sign a consent form that explains the project in detail.

The CSN is one of 20 federally funded Networks of Centres of Excellence, the objectives of which are to enhance the Canadian economy and our quality of life. The NCE program is funded by the Natural Sciences and Engineering Research Council (NSERC), the Canadian Institutes of Health Research (CIHR) and the Social Sciences and Humanities Research Council SSHRC), in partnership with Industry Canada. The CSN also receives funding from the Ontario Ministry of Health and private corporations.

To learn more about the Canadian Stroke Network, visit www.canadianstrokenetwork.ca.