Making data FAIR is a frequent requirement in research projects. But FAIR data is not a goal in itself. It is the path to knowledge discovery, data integration, and reuse by the community.
Below animation, made by Bruna Dos Santos Vieira and published at the International Society for the Study of Vascular Anomalies, features one of our Vascular anomalies experts finding a suitable treatment for a patient only because of the FAIR data principles. Please note it is about a fictional medical case where the real FAIR methodology and benefits are highlighted.
Radboudumc is involved in several projects that implement FAIR data infrastructure and promote better data stewardship, for example, the European Joint Programme on Rare Diseases, the European Reference Networks for rare disease registry projects, and ZonMW sponsored COVID-19 research projects. This work is encouraged by the EU and partners in the Netherlands. Some of these partners are HealthRI, the NFU, GO-FAIR, and the Dutch Techcentre for Life Sciences.
Soon we will be able to showcase real life FAIR results. Leo Schultze Kool and his team are actually implementing the FAIR Registry of Vascular Anomalies here at our hospital. Radboudumc is one of the specialized health care providers from VASCERN, an European Reference Network created to improve rare disease patients treatment, diagnosis and care pathway.
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