Peter-Bram ‘t Hoen, Interoperability and FAIRification Work Package Lead, explained in his online presentation on setting up a FAIR registry for EURO-NMD the difference between data sharing and data visiting. “In order to answer any questions related to neuromuscular diseases, you would require information from different sources, also from different countries. With rare diseases, these data are currently very fragmented. The traditional solution to this problem is to bring all the data together and ask the individual registries in different countries to share their data. This yields to the so-called YAD syndrome (Yet Another Database).”
This centralization effort in Peter-Bram’s view “is not the way forward. It means a lot of double work in maintaining the various resources, which is very difficult to sustain. It comes with synchronisation issues with resources that were already there and legal constraints. Sometimes, it is just not possible to share data across national borders and even unavoidable due to computational reasons”. Peter-Bram argues that “the way forward is not data sharing but data visiting”. He added, “In the data visiting concept, the questions or analysis algorithms travel to the data. Instead of the data to the analysis. The data visiting solutions speeds up the progress towards earlier diagnosis and new treatments of rare diseases. It avoids double data entry and ambiguity. It standardizes and harmonizes the dataset only once at the source”.