The ENSAT registry is the central application that supports a Virtual Research Environment in Europe – co-ordinating and enhancing research and study into a collection of rare adrenal cancer types across national boundaries. The registry provides a variety of support mechanisms for the uploading, distribution and collaborative analysis of data. Biomaterial samples are tracked between centres, search functions allow a “match-making service” to be provided between partners, related studies are linked, and feasibility studies can be quickly conducted for new projects and research avenues, which would otherwise take months to achieve.
The project is a €6m European FP7 funded project, with IT development support and infrastructure being provided by the Melbourne eResearch Group, based at the University of Melbourne. The project investigates different aspects of clinical and genetic influences on the development of the adrenal tumour types: adrenocortical carcinomas (ACC), pheochromocytomas, non-aldosterone producing adenomas (NAPACA) and aldosterone-producing adenomas (APA).
The computational and informatics support work is significant, at a strong production level, and feature development is conducted rapidly. Biomaterial records provide primary support for several of the centres, with automatic linkage across national boundaries by the use of a central identification system. The ethics protocols for each country have been approved, providing a highly advantageous template for other rare-disease platforms that wish to similarly work across national boundaries. The registry serves as a central repository supporting many clinical trials – incorporating prospective trial data that can be used in future trials, or allowing analysis of data from retrospective trials for long-term follow-up studies, whilst incorporating the latest in security protocols and best practices for the holding of clinical data.
This talk will give an overview of ENSAT-CANCER focusing on the value added services that have been developed, used for storage and management of biomaterials, and their use in full four-phase clinical trials.