The Luxembourgish National Cancer Registry (RNC) at LIH joined the consortium of the European Health Data & Evidence Network (EHDEN). The LIH team, which involves the RNC, the IT eXpertise in Health Data (IT-X-HD) and the Deep Digital Phenotyping Research Unit of the LIH Department of Population Health (DoPH), as well as the IT company Information Technology for Translational Medicine (ITTM), secured a cross-disciplinary grant for a duration of 12 months to accelerate the standardisation of clinical data.
Real-world clinical data has the potential to transform our understanding of health, disease and treatment. Yet, it is currently dispersed across multiple institutions and countries, stored in different formats and systems, and subject to different rules, challenging policy restrictions and technology considerations. This makes it very difficult to fully exploit its potential to the benefit of European patients.
In this context, EHDEN aims to accelerate the harmonised large-scale analysis of health data in Europe and reduce the time that it takes to provide an answer in real-word health research. Specifically, its goal is to build a federated data network allowing access to the data of over 100 million EU citizens in a harmonised and standardised common data model. This will enable the smarter management and sharing of research methodologies, therefore improving collaboration and expanding education in open science.
In close collaboration with ITTM, the RNC and the IT-X-HD unit will set up and implement IT tools and processes, such as those developed by the international Observational Health Data Sciences and Informatics (OHDSI) open science collaboration, that will transform the data of the RNC into the so-called OMOP (Observational Medical Outcomes Partnership) common data model – a model that will allow patient data to be captured in the same way across different institutions.
Joining the EHDEN consortium is an excellent opportunity for the RNC to proactively demonstrate its commitment to evolving its data structure towards more streamlined and harmonised health data formats, ultimately contributing to facilitating the use of clinical and epidemiological cancer-related data to improve patient outcomesexplains Dr Claudine Backes, Principal Investigator and coordinator of the project.
“This project also offers LIH the opportunity to forge European collaborations, namely in cancer epidemiology, by enabling potential innovative big health data linkages”, she adds.
EHDEN is a flagship project funded by the Innovative Medicines Initiative 2 Joint Undertaking (IMI 2) and is part of the IMI Big Data for Better Outcomes programme.
The European Health Data & Evidence Network has received funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU) under grant agreement No 806968. The JU receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.