TY - JOUR
T1 - The Multiple Sclerosis Data Alliance Catalogue Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources
AU - Geys, Lotte
AU - Parciak, Tina
AU - Pirmani, Ashkan
AU - McBurney, Robert
AU - Schmidt, Hollie
AU - Malbaša, Tanja
AU - Ziemssen, Tjalf
AU - Bergmann, Arnfin
AU - Rojas, Juan I.
AU - Cristiano, Edgardo
AU - García-Merino, Juan Antonio
AU - Fernández, Óscar
AU - Kuhle, Jens
AU - Gobbi, Claudio
AU - Delmas, Amber
AU - Simpson-Yap, Steve
AU - Nag, Nupur
AU - Yamout, Bassem
AU - Steinemann, Nina
AU - Seeldrayers, Pierrette
AU - Dubois, B. nédicte
AU - van der Mei, Ingrid
AU - Stahmann, Alexander
AU - Drulovic, Jelena
AU - Pekmezovic, Tatjana
AU - Brola, Waldemar
AU - Tintore, Mar
AU - Kalkers, Nynke
AU - Ivanov, Rumen
AU - Zakaria, Magd
AU - Naseer, Maged Abdel
AU - Hecke, Wim Van
AU - Grigoriadis, Nikolaos
AU - Boziki, Marina
AU - Carra, Adriana
AU - Pawlak, Mikolaj A.
AU - Dobson, Ruth
AU - Hellwig, Kerstin
AU - Gallagher, Arlene
AU - Leocani, Letizia
AU - Costa, Gloria Dalla
AU - de Carvalho Sousa, Nise Alessandra
AU - Wijmeersch, Bart Van
AU - Peeters, Liesbet M.
PY - 2021/11/1
Y1 - 2021/11/1
N2 - 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.
AB - 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.
UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85123623807&origin=inward
UR - https://www.ncbi.nlm.nih.gov/pubmed/35035297
U2 - https://doi.org/10.7224/1537-2073.2021-006
DO - https://doi.org/10.7224/1537-2073.2021-006
M3 - Article
C2 - 35035297
SN - 1537-2073
VL - 23
SP - 261
EP - 268
JO - International Journal of MS Care
JF - International Journal of MS Care
IS - 6
ER -