MSDA Catalogue

Within the MS Data Alliance, we strive to overcome challenges that arise with scaling up real-world MS data. It is important to scale-up because you need a lot of data to be able to reach insights on a personalized level. Finding the data sources you’re interested in, can be very hard and time-consuming. Therefore, the MSDA Catalogue, which was launched in 2019, could be useful since it aims to reduce the time needed to discover real-world MS datasets. 

The Catalogue consists basically of questionnaires that can be completed by MS registry owners or other initiatives that collect real-world MS data. The answers to the questionnaires give an impression on how the registry or initiative works, what variables they collect, how they do that, about the data quality and governance. So, it shows a lot of useful information about the data they collect, without showing the real data. Thereby, it allows end-users with particular study requirements or research questions to browse metadata profiles of MS real-world data registries/cohorts. 

In addition to reducing the time needed to discover real-world MS datasets and therefore to facilitate collaborative research, the Catalogue is a valuable educational tool as well. The metadata shared by the registries/cohorts give a first impression on the level of awareness and experience when it comes to registries/cohorts. The metadata could inspire others while browsing the Catalogue or during our academy activities, e.g. the educational program on "How to set-up a registry", which aims to introduce some important concepts related to real-world data handling as well as to inspire through the use of success stories and testimonials.

Currently, 42 registries/data initiatives are already part of the Catalogue, which is fabulous. However, we would like to have as many continents and countries to be part of it. If you would like to become part of the MSDA Catalogue or if you could bring us into contact with additional MS data initiatives, don't hesitate to contact us (lotte.geys@msdataalliance.com).