A collaborative infrastructure supporting international adrenal cancer research

Abstract

A wealth of information about adrenal cancer exists in many individual specialist centres around the world. The cancers themselves are very rare, often fatal and no common consensus on optimal treatment strategies exists, and certainly no treatments targeted to the individual genetic makeup of the tumours and individuals. In order to conduct effective and progressive research into these tumours and the surrounding conditions and treatments of individuals, it is essential to pool the expertise from specialist centres that exist in each country. The ENSAT-CANCER project is a 5-year European Union FP7-funded project tasked with this, through the development of an online environment that holds core data from a body of patients aligned with identified needs from leading specialists in the field. These data sets are also augmented with a host of tools and features that enable and support the research in this domain. This presentation will describe some of the novel features that have been developed in the project including biobank labelling and “match-making” services between centres. The presentation will also cover the hurdles involved in putting together such an enterprise – such as ethical approval for international data sharing and the establishment of canonical identification systems, and how these have been successfully overcome. The ENSAT-CANCER platform has now been used to support a portfolio of major international genetically targeted clinical trials and outcome studies. The presentation will describe the different processes involved in connecting and effectively sharing data and making best use of the ENSAT-CANCER platform. To date, the registry holds over 2900 patient cases and continues to grow every day.