Recent advances in the molecular biology of cancer and precision medicine have substantially increased our understanding of cancer but have also highlighted the multitude of rare pathologies that the term ‘cancer’ encompasses. Under these circumstances, it has become increasingly challenging to find enough patients with homogenous diseases to conduct relevant academic or commercial studies. Finding matched controls for the studies, and controls that share the same co-morbidities as cancer patients, often proves challenging as well. It is increasingly evident that despite the multitude of cancer types identified, each group has its own rare events or rare sub-groups. Even when high-quality research is conducted despite all these challenges, it is variably distributed across Europe.
DIGICORE: a digital research infrastructure
The DIGital Institute for Cancer Outcome REsearch, or DIGICORE, is a brand-new organization set to improve cancer outcomes in Europe precisely by tackling these challenges. It was established in April 2021 through the partnership of two cancer networks (UNICANCER and Alleanza Contro Il Cancro), two industry partners (IQVIA and Illumina), and various prominent cancer centres across Europe. DIGICORE aims to develop a digital research infrastructure consisting of a collection of real-life data to produce evidences.
How will it work?
The idea is to share electronically molecular diagnostic information and patients’ health records among the DIGICORE members interested in a specific study. The electronic records would be standardized, annotated and then gathered into large-scale databases so electronic medical records would be ready for research at any time.
This will be done in compliance with GDPR regulations by building on the expertise of DIGICORE members that have protocols in place for bringing local data to research quality standards in order to develop comprehensive approaches to privacy based on pseudonymisation. However, in terms of clinical decision-making, cancer centres are guaranteed to retain full data control and autonomy over clinical decision-making. Moreover, the industry partners will ensure medical hypothesis neutrality.
“A pool of real-life cancer data”
This digitally enabled research will benefit researchers, clinicians and patients altogether. Translational research from cancer diagnostic to treatment and patient outcomes would benefit from this platform. It would offer a pool of real-life cancer data from a larger patient cohort and as such improve statistical power. In addition, DIGICORE plans to integrate observational research to complement data from clinical trials. In the long term, DIGICORE aims to democratise research and trial access for patients. As part of its mission to help prepare members for the ‘digital revolution’, DIGICORE offers training for its members through the IDEAL4RWE project, to help form a new generation of outcome researchers. DIGICORE also launched the Platinum Fund Project through which 3 million Euros will be allocated to 5 or 6 cancer centres to promote the creation of the first nucleus of expertise in managing data for Real-World Evidence studies. To find out more about IDEAL4RWE or the Platinum Fund Project, contact info@digicore-cancer.eu.
Interested in finding out more? Click here to visit the DIGICORE website
