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García-Merino J.a.Author
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The Multiple Sclerosis Data Alliance Catalogue Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources

Publicated to:International Journal of MS Care. 23 (6): 261-268 - 2021-01-01 23(6), DOI: 10.7224/1537-2073.2021-006

Authors: Geys L; Parciak T; Pirmani A; McBurney R; Schmidt H; Malbaša T; Ziemssen T; Bergmann A; Rojas JI; Cristiano E; García-Merino JA; Fernández Ó; Kuhle J; Gobbi C; Delmas A; Simpson-Yap S; Nag N; Yamout B; Steinemann N; Seeldrayers P; Dubois B; van der Mei I; 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

Affiliations

Accelerated Cure Project - Author
Ain Shams University - Author
American University of Beirut Medical Center - Author
Aristotle University of Thessaloniki - Author
Association of Multiple Sclerosis Societies of Croatia - Author
Barts and the London School of Medicine and Dentistry - Author
Belgrade University School of Medicine - Author
Biomedical Research Institute (BIOMED) , Noorderhart , University MS Center (UMSC) - Author
Biomedical Research Institute (BIOMED) , University MS Center (UMSC) , Data Science Institute - Author
Cairo University - Author
Centre Hospitalier Universitaire de Charleroi - Author
Centro de Educacion Medica e Investigaciones Clinicas Norberto Quirno - Author
Ente Ospedaliero Cantonale , Università della Svizzera italiana - Author
German MS Register - Author
Hospital Britanico de Buenos Aires - Author
Hospital Universitari Vall d'Hebron - Author
Icometrix - Author
INC - Author
Jan Kochanowski University, Kielce - Author
Katholisches Klinikum Bochum - Author
Klinicki Centar Srbije - Author
KU Leuven , Biomedical Research Institute (BIOMED) , University MS Center (UMSC) , Data Science Institute - Author
Leuven Brain Institute , Departement Neurowetenschappen , KU Leuven– University Hospital Leuven - Author
Ltd. - Author
Medicines and Healthcare products Regulatory Agency - Author
Melbourne School of Population and Global Health - Author
Menzies Institute for Medical Research - Author
MS Center of Buenos Aires (CEMBA) - Author
NeuroTransData GmbH - Author
OLVG - Author
Poznan University of Medical Sciences - Author
REDONE – Brazilian Registry of Multiple Sclerosis and Neuromyelitis Optica Spectrum Disorders , Hospital Universitário Getúlio Vargas - Author
Universidad Autónoma de Madrid , Hospital Universitario Puerta de Hierro Majadahonda - Author
Universidad de Málaga - Author
Universita Vita-Salute San Raffaele - Author
Universitat Zurich - Author
Universitätsklinikum Carl Gustav Carus Dresden - Author
Universitätsmedizin Göttingen , Universiteit Hasselt , Biomedical Research Institute (BIOMED) , University MS Center (UMSC) , Data Science Institute - Author
Universitatsspital Basel - Author
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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. Int J MS Care. 2021;23:261-268.

Keywords
catalogmultiple sclerosis (ms)real-world dataRegistry

Quality index

Bibliometric impact. Analysis of the contribution and dissemination channel

The work has been published in the journal International Journal of MS Care due to its progression and the good impact it has achieved in recent years, according to the agency Scopus (SJR), it has become a reference in its field. In the year of publication of the work, 2021, it was in position , thus managing to position itself as a Q1 (Primer Cuartil), in the category Advanced and Specialized Nursing.

From a relative perspective, and based on the normalized impact indicator calculated from World Citations from Scopus Elsevier, it yields a value for the Field-Weighted Citation Impact from the Scopus agency: 1.25, which indicates that, compared to works in the same discipline and in the same year of publication, it ranks as a work cited above average. (source consulted: ESI Nov 14, 2024)

This information is reinforced by other indicators of the same type, which, although dynamic over time and dependent on the set of average global citations at the time of their calculation, consistently position the work at some point among the top 50% most cited in its field:

  • Field Citation Ratio (FCR) from Dimensions: 3.2 (source consulted: Dimensions Apr 2025)

Specifically, and according to different indexing agencies, this work has accumulated citations as of 2025-04-29, the following number of citations:

  • Scopus: 10
  • OpenCitations: 6
Impact and social visibility

From the perspective of influence or social adoption, and based on metrics associated with mentions and interactions provided by agencies specializing in calculating the so-called "Alternative or Social Metrics," we can highlight as of 2025-04-29:

  • The use, from an academic perspective evidenced by the Altmetric agency indicator referring to aggregations made by the personal bibliographic manager Mendeley, gives us a total of: 46.
  • The use of this contribution in bookmarks, code forks, additions to favorite lists for recurrent reading, as well as general views, indicates that someone is using the publication as a basis for their current work. This may be a notable indicator of future more formal and academic citations. This claim is supported by the result of the "Capture" indicator, which yields a total of: 48 (PlumX).

With a more dissemination-oriented intent and targeting more general audiences, we can observe other more global scores such as:

  • The Total Score from Altmetric: 9.25.
  • The number of mentions on the social network X (formerly Twitter): 6 (Altmetric).

It is essential to present evidence supporting full alignment with institutional principles and guidelines on Open Science and the Conservation and Dissemination of Intellectual Heritage. A clear example of this is:

  • The work has been submitted to a journal whose editorial policy allows open Open Access publication.
Leadership analysis of institutional authors

This work has been carried out with international collaboration, specifically with researchers from: Argentina; Australia; Belgium; Brazil; Bulgaria; Croatia; Egypt; Germany; Greece; Italy; Lebanon; Netherlands; Poland; Serbia; Switzerland; United Kingdom; United States of America.