e-Enabling International Cancer Research: Lessons Being Learnt in the ENS@T-CANCER Project

Abstract

Breakthroughs in biomedicine are driven by research. More often than not, research takes place outside of a healthcare setting. However access to and use of clinical data for research purposes has many challenges that must be overcome, not least of which are the lack of standardized nomenclature and the heterogeneity of healthcare IT systems. For rare conditions, this challenge is particularly acute since the scarcity of data makes scientific breakthroughs increasingly difficult. Adrenal tumours represent one rare disease area where consolidation of clinical and biological information is urgently required. This paper describes the lessons being learnt in the development and rollout of an advanced security-oriented, virtual research environment (VRE) as part of the EU funded ENS@T-CANCER project. This system is currently used by 39 major cancer research centres across Europe and provides a unique resource for adrenal cancer research, underpinning an expanding portfolio of major international clinical trials and studies.