New Luxembourg hub stores personal medical data for research

Data generated in Luxembourg will be stored directly in the new node
Data generated in Luxembourg will be stored directly in the new node
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Researchers across Europe will have access to personal biomedical data stored centrally in Luxembourg when a secure hub-and-node infrastructure is launched in September.

ELIXIR-LU (European Life Sciences Infrastructure for Biological Information) is a hub in which biological data will be permanently accessible for research and will be located at the Luxembourg Centre for Systems Biomedicine (LCSB) of the University.

It is one of 15 ELIXIR infrastructures across Europe and is funded by the ministry of higher education and research. ELIXIR-LU will hold data in the field of translational medicine -- a growing discipline in biomedical research which aims to contribute to the discovery of new diagnostic tools.

"Providing these data for other researchers and analysing them in different contexts could lead to new diagnostic methods, better therapies, or hitherto unknown approaches in the prevention of certain diseases," Dr Reinhard Schneider, head of ELIXIR-LU, said.

Patients have no cause for concern about potential misuse of their personal data, according to Dr. Regina Becker, who was responsible for developing the strategy in the LCSB bioinformatics department and who was in charge of drafting the Luxembourg application for ELIXIR membership.

"For widespread use of data across institutional and national borders, we are implementing a system that ensures only authorised researchers have access and that the identity of the patients will never be known to these researchers," she said. "It also complies with the current privacy directives of the respective country where each study was conducted."

Personalised medical data generated for schemes such as patient cohort studies are usually kept for the respective project and not standardised. But the goal is to convert the data into standardised format and store them in databases for new medical investigations.

Data generated in Luxembourg will be stored directly in the new node, while data from the patient studies of other European partners will be imported into the Luxembourg node and kept permanently available there. This saves time and the research money that would otherwise be spent on collecting duplicate data.

"ELIXIR-LU allows scientists everywhere in Europe to browse through the databases, much like in a catalogue, and to find data sets relevant to the scientific questions they are pursuing," Dr. Schneider added.

(Heledd Pritchard, heledd.pritchard@wort.lu, +352 49 93 459)

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