Duchenne Centre Netherlands was also present at the Europe Biobank Week 2025 and extremely well-represented with 2 orals and 1 poster, or 1 in every 5 Dutch submissions.
We had ample opportunity to showcase our excellent coverage with the DDD-registry, shared the latest findings about the NeuroMuscular Diseases biobank, which also includes Duchenne and Becker MD, and were invited to share our experiences and solutions to make Real World Data interoperable and reusable as is, so FAIR from the start.
The presentation are available for download:
FISMA for high quality and interoperable real-world data on Dystrophinopathies (666,58 KB) Gap analysis of 4-year data in the Dutch Dystrophinopathy Database (501,64 KB)
DCN was represented by Roger Snijder
Roger Snijder has been working for LUMC, Leiden University Medical Centre, since 2007. His first assignment was representing LUMC during the National Biobank meetings, and consulting LUMC on the implementation of nationally agreed policies regarding these national multicentre biobanks as information architect for the integration of research into healthcare – a position he holds to this day. Later, he also joined the organisation of National Biobanks as national coordinator of information architecture. As one of the Dutch champions of semantic interoperability (as FAIR was originally known), Roger is a staunch forefighter for clinical context and curation at the source, as is evident in his brainchild FISMA*, an information model for Real-World Data. Fully employed by LUMC Biobank Organisation, Roger offers consultancy on methodology and information architecture for Duchenne Centre Netherlands (DCN), and more recently, the chairman for research in the new EHR for LUMC, as well as a senior consultant regarding research architecture for the LUMC data platform. Roger represents LUMC as an information architect, and IT consultant for Biobanks at the Health RI / BBMRI NL initiative.
*FISMA is a joint effort of Yvonne Krom & Erik Niks of DCN, and Roger Snijder