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The Multiple Sclerosis Data Alliance Catalogue: Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources.
Geys, Lotte; Parciak, Tina; Pirmani, Ashkan; McBurney, Robert; Schmidt, Hollie; Malbasa, Tanja; Ziemssen, Tjalf; Bergmann, Arnfin; Rojas, Juan I; Cristiano, Edgardo; García-Merino, Juan Antonio; Fernández, Óscar; Kuhle, Jens; Gobbi, Claudio; Delmas, Amber; Simpson-Yap, Steve; Nag, Nupur; Yamout, Bassem; Steinemann, Nina; Seeldrayers, Pierrette; Dubois, Bénédicte; van der Mei, Ingrid; Stahmann, Alexander; Drulovic, Jelena; Pekmezovic, Tatjana; Brola, Waldemar; Tintore, Mar; Kalkers, Nynke; Ivanov, Rumen; Zakaria, Magd; Naseer, Maged Abdel; Van Hecke, Wim; Grigoriadis, Nikolaos; Boziki, Marina; Carra, Adriana; Pawlak, Mikolaj A; Dobson, Ruth; Hellwig, Kerstin; Gallagher, Arlene; Leocani, Letizia; Dalla Costa, Gloria; de Carvalho Sousa, Nise Alessandra; Van Wijmeersch, Bart; Peeters, Liesbet M.
  • Geys L; University MS Center, Hasselt-Pelt, Belgium (LG, TParciak, AP, BVW, LMP).
  • Parciak T; Biomedical Research Institute (BIOMED) (LG, TParciak, AP, BVW, LMP), University of Hasselt, Diepenbeek, Belgium.
  • Pirmani A; Data Science Institute (LG, TParciak, AP, LMP), University of Hasselt, Diepenbeek, Belgium.
  • McBurney R; University MS Center, Hasselt-Pelt, Belgium (LG, TParciak, AP, BVW, LMP).
  • Schmidt H; Biomedical Research Institute (BIOMED) (LG, TParciak, AP, BVW, LMP), University of Hasselt, Diepenbeek, Belgium.
  • Malbasa T; Data Science Institute (LG, TParciak, AP, LMP), University of Hasselt, Diepenbeek, Belgium.
  • Ziemssen T; University Medical Center Göttingen, Department of Medical Informatics, Germany (TParciak).
  • Bergmann A; University MS Center, Hasselt-Pelt, Belgium (LG, TParciak, AP, BVW, LMP).
  • Rojas JI; Biomedical Research Institute (BIOMED) (LG, TParciak, AP, BVW, LMP), University of Hasselt, Diepenbeek, Belgium.
  • Cristiano E; ESAT-STADIUS, KU Leuven, Leuven, Belgium (AP).
  • García-Merino JA; Accelerated Cure Project for MS, Waltham, MA, USA (RM, HS).
  • Fernández Ó; Accelerated Cure Project for MS, Waltham, MA, USA (RM, HS).
  • Kuhle J; Association of Multiple Sclerosis Societies of Croatia, Zagreb (TM).
  • Gobbi C; Center for Clinical Neuroscience, University Hospital Dresden, Germany (TZ).
  • Delmas A; NeuroTransData Study Group, Neuburg/Donau, Germany (AB).
  • Simpson-Yap S; Neurology Department, Hospital Universitario de CEMIC, Buenos Aires, Argentina (JIR).
  • Nag N; MS Center of Buenos Aires (CEMBA), Argentina (EC).
  • Yamout B; Department of Neurology, Universidad Autonoma de Madrid, Spain (JAG-M).
  • Steinemann N; Neurology Service, Puerta de Hierro Hospital, Majadahonda, Madrid, Spain (JAG-M).
  • Seeldrayers P; University of Malaga, Department of Pharmacology, Spain (OF).
  • Dubois B; Neurologic Clinic and Policlinic, MS Center and Research Center for Clinical Neuroimmunology and Neuroscience Basel (RC2NB), University Hospital Basel, University of Basel, Basel, Switzerland (JK).
  • van der Mei I; Multiple Sclerosis Center, Department of Neurology, Neurocenter of Southern Switzerland, Lugano, Switzerland (CG).
  • Stahmann A; Faculty of Biomedical Sciences, Università della Svizzera Italiana, Lugano, Switzerland (CG).
  • Drulovic J; Life Sciences Department, EHealthLine.com, Inc (AD).
  • Pekmezovic T; Neuroepidemiology Unit, Melbourne School of Population and Global Health, The University of Melbourne, Australia (SS-Y, NN).
  • Brola W; Neuroepidemiology Unit, Melbourne School of Population and Global Health, The University of Melbourne, Australia (SS-Y, NN).
  • Tintore M; Multiple Sclerosis Center, American University of Beirut Medical Center, Lebanon (BY).
  • Kalkers N; Data Center of the Swiss Multiple Sclerosis Registry, Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Switzerland (NS).
  • Ivanov R; Department of Neurology, CHU de Charleroi, Charleroi, Belgium (PS).
  • Zakaria M; Department of Neurosciences, Laboratory for Neuroimmunology, KU Leuven, Leuven, Belgium (BD).
  • Naseer MA; Leuven Brain Institute KU Leuven, Leuven, Belgium (BD).
  • Van Hecke W; Department of Neurology, University Hospitals Leuven, Leuven, Belgium (BD).
  • Grigoriadis N; Menzies Institute for Medical Research, University of Tasmania, Hobart TAS, Australia (IvdM).
  • Boziki M; German MS-Registry, MS Forschungs- und Projektentwicklungs-gGmbH, Hannover, Germany (AS).
  • Carra A; Clinic of Neurology, Clinical Center of Serbia, Belgrade, Serbia (JD).
  • Pawlak MA; Institute of Epidemiology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia (TPekmezovic).
  • Dobson R; Collegium Medicum, Jan Kochanowski University, Kielce, Poland (WB).
  • Hellwig K; Centre d'Esclerosi Múltiple de Catalunya (Cemcat), Edifici Cemcat, Hospital Universitari Vall d'Hebron, Barcelona, Spain (MT).
  • Gallagher A; Department of Neurology, OLVG, and Department of Neurology, Amsterdam UMC, Location VUMC, Amsterdam, the Netherlands (NK).
  • Leocani L; PMA - Pharma Marketing Advisors, Ltd, Sofia, Bulgaria (RI).
  • Dalla Costa G; Department of Neurology, Ain Shams University, Egypt (MZ).
  • de Carvalho Sousa NA; Department of Neurology, Cairo University, Egypt (MAN).
  • Van Wijmeersch B; icometrix, Leuven, Belgium (WVH).
  • Peeters LM; Second Neurological University Department, Multiple Sclerosis Center, Aristotle University of Thessaloniki, AHEPA General University Hospital, Thessaloniki Greece (NG, MB).
Int J MS Care ; 23(6): 261-268, 2021.
Article in English | MEDLINE | ID: covidwho-1626428
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.
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Full text: Available Collection: International databases Database: MEDLINE Type of study: Cohort study / Observational study / Prognostic study Language: English Journal: Int J MS Care Year: 2021 Document Type: Article

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Full text: Available Collection: International databases Database: MEDLINE Type of study: Cohort study / Observational study / Prognostic study Language: English Journal: Int J MS Care Year: 2021 Document Type: Article