Beyond a Disease Registry: An Integrated Virtual Environment for Adrenal Cancer Research

Abstract

Many biomedical research collaborations are focused on the establishment of web-based databases that capture phenotypic and in some cases genotypic information, targeted to specific diseases – so called disease registries. Such resources are often used for clinical matchmaking and allow information on patients and patient disorders to be shared by clinicians with wider biomedical research communities outside of a given hospital setting, and potentially with patients and/or patient advisory groups. Whilst addressing aspects of clinical collaborations through making targeted biomedical data accessible - such registries are really only a starting point for what can be achieved to support research collaborations. In particular, registries should ideally be augmented with a portfolio of additional service offerings that facilitate secure research collaborations: bio-banking and bio-sample data tracking capabilities; support for feasibility analysis on clinical trials and studies; offer seamless data transfer to/from clinical trials; provide search and analytical capabilities in a user-driven research environment. Such a feature rich, Internet-based virtual research environment (VRE) has been established as part of the European Union funded ENS@T-CANCER (http://www.ensat-canser.eu) project that has a particular focus on supporting research into four primary types of adrenal tumors. This paper provides an overview of the ENS@T-CANCER VRE, outlining its core capabilities and how it has galvanized previously and largely fragmented, country-specific database and registry efforts. To illustrate the utility of the ENS@T-CANCER VRE for clinical trials we focus on the full 4-phase, international, multi-centre Prospective Monoamine Tumor (PMT) clinical trial and its utilisation of capabilities provided by the VRE.