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.
Generating insights and evidence from real-world clinical data at scale is a major challenge. Yet, it has the optential to support patients, clinicians, payers, regulators, governments, and the industry in understanding wellbeing, disease, treatments, outcomes and new therapeutics and devices.
The Luxembourgish National Cancer Registry (RNC) at the Luxembourg Institute of Health (LIH) joined the consortium of the European Health Data & Evidence Network (EHDEN). The LIH team secured a cross-disciplinary grant for a duration of 12 months to accelerate the standardisation of clinical data.
Accelerating the harmonised large-scale analysis of health data
The LIH team will set up and implement IT tools and processes, such as those developed by the international Observational Health Data Sciences and Informatics open science collaboration, that will turn the data 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 outcomes.”Dr Claudine Backes, Principal Investigator and coordinator of the project.
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.
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.
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