Geys, L and Parciak, T and Pirmani, A and McBurney, R and Schmidt, H and Malbasa, T and Ziemssen, T and Bergmann, A and Rojas, JI and Cristiano, E and Garcia-Merino, JA and Fernandez, O and Kuhle, J and Gobbi, C and Delmas, A and Simpson-Yap, S and Nag, N and Yamout, B and Steinemann, N and Seeldrayers, P and Dubois, B and van der Mei, I and Stahmann, A and Drulovic, J and Pekmezovic, T and Brola, W and Tintore, M and Kalkers, N and Ivanov, R and Zakaria, M and Naseer, MA and Hecke, WV and Grigoriadis, N and Boziki, M and Carra, A and Pawlak, MA and Dobson, R and Hellwig, K and Gallagher, A and Leocani, L and Costa, GD and de Carvalho Sousa, NA and Wijmeersch, BV and Peeters, LM, The Multiple Sclerosis Data Alliance Catalogue Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources, International Journal of MS Care, 23, (6) pp. 261-268. ISSN 1537-2073 (2021) [Refereed Article]
© 2021 Consortium of Multiple Sclerosis Centers.
Official URL: https://meridian.allenpress.com/ijmsc/article/23/6...
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.
|Item Type:||Refereed Article|
|Keywords:||Multiple Sclerosis; real-word data; registries; meta-data; catalogue|
|Research Division:||Biomedical and Clinical Sciences|
|Research Field:||Neurology and neuromuscular diseases|
|Objective Group:||Clinical health|
|Objective Field:||Treatment of human diseases and conditions|
|UTAS Author:||van der Mei, I (Professor Ingrid van der Mei)|
|Deposited By:||Menzies Institute for Medical Research|
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