OHDSI Luxembourg

Generating meaningful insights from real-world clinical data at scale is a major challenge. However, it has immense potential to support patients, clinicians, regulators, governments, and the industry in understanding disease treatment and how new therapeutics and devices can be used.

Background 

To speed up the standardization of clinical data, the Luxembourgish National Cancer Registry (Registre National du Cancer du Luxembourg, RNC) at the Luxembourg Institute of Health (LIH) has joined the consortium of the European Health Data & Evidence Network (EHDEN). The LIH team secured a year long cross-disciplinary grant to accelerate the standardisation of clinical data (Principal Investigator and coordinator of the project: Dr Claudine Backes). 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. 

Luxembourg’s National Cancer Registry is the first data collection programme in Luxembourg mapped into the OMOP (Observational Medical Outcomes Partnership) common data model, which will allow patient data to be captured in the same way across different institutions. For this project, a new collaboration and regular knowledge transfer was developed with the Information Technology for Translational Medicine S.A (ITTM), one of the first small and medium-sized enterprises (SMEs) certified by EHDEN. IT tools and processes, such as those developed by the international Observational Health Data Sciences and Informatics (OHDSI) open science collaboration, were set up and implemented for this first real-world data implementation in Luxembourg.

Thanks to this success, the OHDSI funding organisations aim to empower Luxembourg clinicians and researchers with good practices and lessons in order to participate in the international studies of the OHDSI network. In this vein, the OHDSI Luxembourg Node is offering a platform to share and discuss approaches, tools, and methods as well as to collaborate on new research projects. Collaborations with other working groups from OHDSI will also be promoted.

Objectives 

Our foreseen working areas are to:

• Create a multi stakeholder group and network on OMOP-CDM resources
  • organize bi-monthly calls
• Provide guidance, teaching, support for those who need it
• Create and share infrastructure, processes, vocabulary extensions and improvements (Med Dev. / PROMs / …)
• Create and share synthetic data and data quality solutions
• Provide and share data protection concepts, data re-use etc

Leading Organisation 

• Luxembourg Institute of Health (LIH)

1A-B, rue Thomas Edison, L-1445 Strassen, Luxembourg

• Information Technology for Translational Medicine S.A. (ITTM)

27 Rue Henri Koch – House of BioHealth, 4354 Esch-sur-Alzette, Luxembourg

Members 

Data Partners 

Publications

• Kerstin Gierend, Frank Krüger, Dagmar Waltemath, Maximilian Fünfgeld, Thomas Ganslandt, Atinkut Alamirrew Zeleke. Approaches and Criteria for Provenance in Biomedical Data Sets and Workflows: Protocol for a Scoping Review
  JMIR Res Protoc. 2021 Nov 22;10(11):e31750. doi: 10.2196/31750.

• Johannes A. Kroes, Aruna T. Bansal, Emmanuelle Berret, Nils Christian, Andreas Kremer, Anna Alloni, Matteo Gabetta, Chris Marshall, Scott Wagers, Ratko Djukanovic, Celeste Porsbjerg, Dominique Hamerlijnck, Olivia Fulton, Anneke ten Brinke, Elisabeth H. Bel, Jacob K. Sont. ERJ Open Research 2022 8: 00168-2022; DOI: 10.1183/23120541.00168-2022

How to contribute?

You can find latest news, working groups and chats in the MS Teams Workgroup OHDSI Europe.  

If you have not already done so, please also subscribe to the OHDSI Community and the different working groups you prefer (IMPORTANT: you need to select at least the "Europe" chapter in section #6 of the form)