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The Multiple Sclerosis Data Alliance Catalogue: Enabling Web-Based Discovery of Metadata from Real-World Multiple
Lotte Geys1,2,3, Tina Parciak1,2,3,4, Ashkan Pirmani1,2,5
1University MS Center, Hasselt-Pelt, Belgium (LG, TParciak, AP, BVW, LMP).
International Journal of MS Care
|January 17, 2022
Summary
The Multiple Sclerosis Data Alliance (MSDA) Catalogue enhances discovery of multiple sclerosis (MS) real-world data (RWD). It details 38 global data sources, aiding researchers in finding relevant MS RWD sets and fostering collaboration.
Area of Science:
- Data Science
- Epidemiology
- Health Informatics
Background:
- The Multiple Sclerosis Data Alliance (MSDA) aims to improve the discovery of multiple sclerosis (MS) real-world data (RWD).
- Facilitating access to diverse MS RWD is crucial for advancing research and patient care.
Purpose of the Study:
- To implement and describe the MSDA Catalogue for discovering MS RWD.
- To provide a comprehensive overview of available MS RWD sources globally.
Main Methods:
- Developed a worldwide, web-based MSDA Catalogue.
- Collected descriptive information on data governance, purpose, inclusion criteria, data quality, and variables collected.
- Included data on e-health technologies and COVID-19 variables.
Main Results:
- As of January 6, 2021, the MSDA Catalogue included 38 data sources across five continents.
- Significant alignment was observed in certain data domains, with personal and basic disease data being most common.
- Data on fatigue measurements and cognitive scales were least frequently collected.
Conclusions:
- The MSDA Catalogue offers a strategic overview of MS RWD sources for authorized users.
- Cataloguing MS RWD is a vital initial step to expedite RWD set discovery and promote collaborative research efforts.
