Please use this identifier to cite or link to this item:
http://hdl.handle.net/1942/37844
Title: | The Multiple Sclerosis Data Alliance Catalogue; Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources | Authors: | GEYS, Lotte PARCIAK, Tina PIRMANI, Ashkan McBurney, Robert Schmidt, Hollie Malbaša, Tanja Ziemssen, Tjalf Bergmann, Arnfin Rojas, Juan I. Cristiano, Edgardo García-Merino, Juan Antonio Fernández, Óscar Kuhle, Jens Gobbi, Claudio Delmas, Amber Simpson-Yap, Steve Nag, Nupur Yamout, Bassem Steinemann, Nina Seeldrayers, Pierrette Dubois, Bénédicte van der Mei, Ingrid Stahmann, Alexander Drulovic, Jelena Pekmezovic, Tatjana Brola, Waldemar Tintore, Mar Kalkers, Nynke Ivanov, Rumen Zakaria, Magd Naseer, Maged Abdel Van Hecke, Wim Grigoriadis, Nikolaos Boziki, Marina Carra, Adriana Pawlak, Mikolaj A. Dobson, Ruth Hellwig, Kerstin Gallagher, Arlene Leocani, Letizia Dalla Costa, Gloria de Carvalho Sousa, Nise Alessandra VAN WIJMEERSCH, Bart PEETERS, Liesbet |
Issue Date: | 2021 | Publisher: | Source: | International journal of MS care, 23 (6) , p. 261 -268 | Abstract: | 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. | Keywords: | Catalog;Multiple sclerosis (MS);Real-world data;Registry | Document URI: | http://hdl.handle.net/1942/37844 | ISSN: | 1537-2073 | DOI: | 10.7224/1537-2073.2021-006 | Rights: | 2021 Consortium of Multiple Sclerosis Centers Free Content Copyright © Consortium of Multiple Sclerosis Centers | Category: | A1 | Type: | Journal Contribution | Validations: | vabb 2024 |
Appears in Collections: | Research publications |
Files in This Item:
File | Description | Size | Format | |
---|---|---|---|---|
Geys-2021-The-multiple-sclerosis-data-allianc.pdf | Published version | 975.37 kB | Adobe PDF | View/Open |
Items in DSpace are protected by copyright, with all rights reserved, unless otherwise indicated.