MSDA Catalogue

Summary:

Within the MS Data Alliance we strive to overcome challenges that arise with scaling up Real-world MS data. The reason why it is important to scale-up is 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 “Catalogue” could be useful in reducing the time needed to discover real-world MS datasets. The MSDA Catalogue was launched in 2019, and 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 questionnaire 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. Indeed, in the Catalogue, only metadata or descriptive data is listed, which contributes to the Findability and Accessibility of data, because even if the data is restricted or not directly available, the metadata is open and available to everyone.

We aim to maintain a metadata Catalogue containing as much metadata as possible. 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 MSDA Catalogue can be accessed via this url. The platform is hosted by BMD Software.

Role of UHasselt:

• hosting the MSDA Catalogue
• define questionnaires of general and COVID-19 catalogue
• support WG3 (eHealth) of the PROMS initiative

Published paper:

Geys L, Parciak T, Pirmani A, et al. 2021 The Multiple Sclerosis Data Alliance Catalogue: Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources. International Journal of MS Care. (link)