Towards a Virtual Research Environment for International Adrenal Cancer Research

Abstract

For many research areas, the need to collaborate across organizational and in certain cases national boundaries is essential. This is especially the case when dealing with rare diseases where a lack of data, information and/or sharing of expertise can cause delays in progressing the understanding and potential diagnosis/treatment of such diseases. Research into adrenal tumours is one such area where co-ordination of international cancer efforts is essential. The European Network for the Study of Adrenal Tumours - Structuring clinical research on adrenal cancers in adults (ENS@T-CANCER) project has recently been funded by the European Union to establish a state of the art Virtual Research Environment (VRE) supporting all aspects of international research and collaboration into the aetiology, diagnosis and establishing optimal treatment strategies for patients with adrenal cancer. It is envisaged that this VRE will comprise a portfolio of clinical databases for the different types of adrenal tumours that exist; support and integrate a seamless federation of adrenal tumour bio-banks with support for bio-sample tracking; support a wide range of – omics research into adrenal tumours and allow results to be shared amongst collaborators; offer advanced visualization services, and support several large-scale clinical trials comprising cohorts of patients with different kinds/treatments of adrenal tumours. This paper outlines the goals of the ENS@T-CANCER project and outlines the on-going implementation work. We show how security-oriented information can be collected and tracked through the VRE including supporting collection of clinical data sets and their linkage with associated bio-samples in an ethically-driven framework.