Category Ranking
98%
Total Visits
921
Avg Visit Duration
2 minutes
Citations
20
Article 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.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8745233 | PMC |
| http://dx.doi.org/10.7224/1537-2073.2021-006 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
The Multiple Sclerosis Data Alliance Catalogue: Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources.
Int J MS Care
December 2021
University MS Center, Hasselt-Pelt, Belgium (LG, TParciak, AP, BVW, LMP).
Article Synopsis
- The Multiple Sclerosis Data Alliance (MSDA) aims to enhance the accessibility and discovery of real-world data (RWD) related to multiple sclerosis.
- The MSDA Catalogue, which is globally available, compiles detailed information about various data sources, including governance and data quality control methods, and currently features 38 data sources from five continents.
- The catalogue reveals trends in data collection, highlighting that personal and basic disease data are most commonly gathered, while aspects like fatigue and cognition measurements are less frequently recorded, ultimately aiding collaboration and reducing discovery times for MS RWD.
A National Representative, Cross-Sectional Study by the Hellenic Academy of NeuroImmunology (HEL.A.NI.) on COVID-19 and Multiple Sclerosis: Overall Impact and Willingness Toward Vaccination.
Front Neurol
November 2021
2nd Neurological University Department, Aristotle University of Thessaloniki, American Hellenic Educational and Progressive Association (AHEPA) General Hospital, Thessaloniki, Greece.
In the context of the coronavirus disease 2019 (COVID-19) pandemic, the constant needs of people with multiple sclerosis (PwMS) and their caregivers were urgently highlighted. The present study aims to capture the effects of the COVID-19 pandemic in several aspects of the quality of life of PwMS, in perception and behavior to COVID-19 and multiple sclerosis (MS), as well as concerning healthcare, working conditions, and the willingness toward COVID-19 vaccination. This study is an initiative of the Hellenic Academy of Neuroimmunology (HEL.
View Article and Find Full Text PDF