University Of Tasmania

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

journal contribution
posted on 2023-05-21, 14:32 authored by Geys, L, Parciak, T, Pirmani, A, McBurney, R, Schmidt, H, Malbasa, T, Ziemssen, T, Bergmann, A, Rojas, JI, Cristiano, E, Garcia-Merino, JA, Fernandez, O, Kuhle, J, Gobbi, C, Delmas, A, Simpson-Yap, S, Nag, N, Yamout, B, Steinemann, N, Seeldrayers, P, Dubois, B, Ingrid van der MeiIngrid van der Mei, Stahmann, A, Drulovic, J, Pekmezovic, T, Brola, W, Tintore, M, Kalkers, N, Ivanov, R, Zakaria, M, Naseer, MA, Hecke, WV, Grigoriadis, N, Boziki, M, Carra, A, Pawlak, MA, Dobson, R, Hellwig, K, Gallagher, A, Leocani, L, Costa, GD, de Carvalho Sousa, NA, Wijmeersch, BV, Peeters, LM
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.


Publication title

International Journal of MS Care










Menzies Institute for Medical Research


Clinicians Group

Place of publication

Clifton, NJ

Rights statement

© 2021 Consortium of Multiple Sclerosis Centers.

Repository Status

  • Restricted

Socio-economic Objectives

Treatment of human diseases and conditions

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