The Multiple Sclerosis Data Alliance Catalogue Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources

Lotte Geys, Tina Parciak, Ashkan Pirmani, Robert McBurney, Hollie Schmidt, Tanja Malbaša, Tjalf Ziemssen, Arnfin Bergmann, Juan I. Rojas, Edgardo Cristiano, Juan Antonio García-Merino, Óscar Fernández, Jens Kuhle, Claudio Gobbi, Amber Delmas, Steve Simpson-Yap, Nupur Nag, Bassem Yamout, Nina Steinemann, Pierrette SeeldrayersB. nédicte Dubois, Ingrid van der Mei, Alexander Stahmann, Jelena Drulovic, Tatjana Pekmezovic, Waldemar Brola, Mar Tintore, Nynke Kalkers, Rumen Ivanov, Magd Zakaria, Maged Abdel Naseer, Wim Van Hecke, Nikolaos Grigoriadis, Marina Boziki, Adriana Carra, Mikolaj A. Pawlak, Ruth Dobson, Kerstin Hellwig, Arlene Gallagher, Letizia Leocani, Gloria Dalla Costa, Nise Alessandra de Carvalho Sousa, Bart Van Wijmeersch, Liesbet M. Peeters

Research output: Contribution to journalArticleAcademicpeer-review

5 Citations (Scopus)


Background: One of the major objectives of the Multiple Sclerosis Data Alliance (MSDA) is to enable better discovery of multiple sclerosis (MS) real-world data (RWD). Methods: We implemented the MSDA Catalogue, which is available worldwide. The current version of the MSDA Catalogue collects descriptive information on governance, purpose, inclusion criteria, procedures for data quality control, and how and which data are collected, including the use of e-health technologies and data on collection of COVID-19 variables. The current cataloguing procedure is performed in several manual steps, securing an effective catalogue. Results: Herein we summarize the status of the MSDA Catalogue as of January 6, 2021. To date, 38 data sources across five continents are included in the MSDA Catalogue. These data sources differ in purpose, maturity, and variables collected, but this landscaping effort shows that there is substantial alignment on some domains. The MSDA Catalogue shows that personal data and basic disease data are the most collected categories of variables, whereas data on fatigue measurements and cognition scales are the least collected in MS registries/cohorts. Conclusions: The Web-based MSDA Catalogue provides strategic overview and allows authorized end users to browse metadata profiles of data cohorts and data sources. There are many existing and arising RWD sources in MS. Detailed cataloguing of MS RWD is a first and useful step toward reducing the time needed to discover MS RWD sets and promoting collaboration. Int J MS Care. 2021;23:261-268.
Original languageEnglish
Pages (from-to)261-268
JournalInternational Journal of MS Care
Issue number6
Publication statusPublished - 1 Nov 2021

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