International experience in stroke registries: lessons learned in establishing the Registry of the Canadian Stroke Network.
This paper discusses the early lessons learned in establishing the Registry of the Canadian Stroke Network (RCSN), particularly the pitfalls related to the requirement for informed patient (or surrogate) consent for inclusion in the registry. The need for stroke registries to collect accurate data that are representative of all patients with acute stroke in a given community is emphasized, and how the current methodology strives to reach this goal is outlined.
Silver
Frank L
FL
Division of Neurology, University of Toronto, Toronto, Ontario, Canada. frank.silver@uhn.on.ca
Kapral
Moira K
MK
Lindsay
M Patrice
MP
Tu
Jack V
JV
Richards
Janice A
JA
D000208:Acute Disease; D000368:Aged; D019985:Benchmarking; D002170:Canada; D003625:Data Collection; D005260:Female; D006801:Humans; D007258:Informed Consent; D038622:Internationality; D008297:Male; D010043:Outcome and Process Assessment, Health Care; D010865:Pilot Projects; D016730:Program Development; D019984:Quality Indicators, Health Care; D012042:Registries; D020521:Stroke / Q000188:drug therapy* / Q000517:prevention & control