Global Data Sharing Initiative
Ran for real, across registries Architected. 2023This one produced evidence that was used. At the start of covid, nobody knew whether multiple sclerosis drugs made the illness worse. No single country had enough patients to answer it. So the MS International Federation and the MS Data Alliance opened a worldwide collection. The answers that came out of it went into the global covid advice given to people with multiple sclerosis. The MS International Federation says so itself.
The decision I owned. Two ways in existed. Send your data, or fill in a form. Any registry that could do neither was simply out. So I built the third, and those registries run the analysis themselves and send back only the result. It brought 45.5% more records than the other two routes had collected.
The hard part was not the code. Eighteen registries, in different countries, under different laws, each with its own custodian and its own IT people. All of them had to agree on what counted as the same thing. Then each had to run it on their own machine. Getting that to happen was most of the work. Whether a study like this can run at all is decided there, long before anyone fits a model.
Switch the three routes off and on
18 registries and 11,284 records at publication. 3,527 of those records came through my route. Five registries use it now. The paper counts four, because the fifth came later. First author on the paper that describes how it was built. JMIR Medical Informatics 11(1):e48030, 2023.