A Canadian Prospective Study of Linkage of Randomized Clinical Trial to Cancer and Mortality Registry Data.

摘要: In a prospective study, we sought to determine acceptability of linkage administrative and clinical trial data among Canadian patients Research Ethics Boards (REBs). The goal is develop more harmonized approach data, with potential improve conduct through enhanced quality collected at reduced cost inconvenience for patients. On completion the original LY.12 randomized in lymphoma (NCT00078949), participants were invited enrol Long-term Innovative Follow-up Extension (LIFE) component. Those consenting do so provided comprehensive identifying information facilitate their data. We prospectively designed global assessment this innovative follow-up including rates REB approval patient consent. pre-specified benchmark was 80%. Of 16 REBs who reviewed research protocol, 14 (89%) approval; two Quebec declined due small numbers. 140 participate, 115 (82%, 95% CI 76 88%) from across 9 provinces consent full name, date birth, health insurance number postal code long-term follow-up. Linkage feasible acceptable. Further collaborative work many stakeholders required an optimized secure research. A coordinated national could rapid testing identification new effective treatments multiple jurisdictions diseases diabetes COVID-19.