First step to independent disease registry

The Academic Medical Centre (AMC) in Amsterdam and foundation Fair Medicine recently completed the eHealth pilot project EuroGo. This project – subsidised by Dutch Health Research and Development organisation ZonMw – aims to create a reliable and complete data registry for Gaucher patients in Europe. Existing drug registries are mostly focused on the efficacy and safety of one drug in particular, and as a result data on different drugs is collected separately. A disease-specific registry – independent of the industry and under the supervision of medical specialists – brings together all of the available data and increases knowledge about the long-term effects of different treatments. This solution is also more cost-effective.

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