Speakers: Christian Ohmann, Rita Banzi, Steve Canham (ECRIN-ERIC)
Transparency and access to research data is a key feature of modern research policy, impacting data quality and the robustness of results, and allowing the optimal use of data generated by research projects. Although the forms of open data access may vary across disciplines, the theme of data accountability and transparency applies broadly to any type of research activity. It is of particular importance for research receiving public funding. The debate around transparency in clinical trials involves additional factors (e.g. consent and protecting privacy) and many different stakeholders. Although various organisations have endorsed the principle of providing the scientific community with access to individual participant data from clinical trials, and several initiatives promote data sharing and have provided recommendations, a global consensus is needed.
Within the H2020-funded CORBEL project, ECRIN (the European Clinical Research Infrastructure Network) working with a large, international group of experts, produced a consensus document listing clear, broadly based and pragmatic recommendations supporting the sharing and reuse of individual-participant data from clinical trials.