Azlan Nur Saidy

Drawing on experiences operationalizing an ever-evolving multi-jurisdictional 18-year longitudinal epidemiological study, the dual Research Coordinator and Research Ethics Board (REB) perspectives offered in this session will provide unique insights into a wide array of practical research ethics-related challenges over the lifetime of a study. While longitudinal studies provide unique insights and are essential for reliably capturing patterns subject to variability over time, there are incredible barriers to setting up and maintaining these studies. Simply from a research ethics perspective, these areas include: contending with progressive, multi-institutional and international review, including British Columbia’s new harmonization initiative; responding to two updates to TCPS 2 policy (2014, 2018); respectful retention and maintaining participant consent in an aging and diverse cohort; accessing medical records post-mortem; and, negotiating participant risks related to open-ended research questions. In this session, we will explore how contending with common challenges in each of these areas has revealed grey areas that push the limits of current guidelines and necessitate a collaborative solutions-driven approach between the REB(s), researchers and relevant stakeholders. This session will offer practical solutions to hurdles we have overcome through this approach, as well as thought-provoking insights into outstanding challenges. Keywords: multi-jurisdictional, harmonization, challenges, opportunities