Multiple Sclerosis Data Alliance - A global multi-stakeholder collaboration to scale-up real world data research.

Ecosystem Humans Multiple Sclerosis / epidemiology Research Design
Real world data collaboration learning health system multiple sclerosis patient engagement

Journal

Multiple sclerosis and related disorders
ISSN: 2211-0356
Titre abrégé: Mult Scler Relat Disord
Pays: Netherlands
ID NLM: 101580247

Informations de publication

Date de publication:
Jan 2021
Historique:
received: 02 10 2020
revised: 09 11 2020
accepted: 16 11 2020
pubmed: 6 12 2020
medline: 15 5 2021
entrez: 5 12 2020
Statut: ppublish

Résumé

The Multiple Sclerosis Data Alliance (MSDA), a global multi-stakeholder collaboration, is working to accelerate research insights for innovative care and treatment for people with multiple sclerosis (MS) through better use of real-world data (RWD). Despite the increasing reliance on RWD, challenges and limitations complicate the generation, collection, and use of these data. MSDA aims to tackle sociological and technical challenges arising with scaling up RWD, specifically focused on MS data. MSDA envisions a patient-centred data ecosystem in which all stakeholders contribute and use big data to co-create the innovations needed to advance timely treatment and care of people with MS.

Identifiants

DOI: 10.1016/j.msard.2020.102634 PMID: 33278741
pubmed: 33278741
pii: S2211-0348(20)30708-2
doi: 10.1016/j.msard.2020.102634
pii:
doi:

Types de publication

Letter

Langues

eng

Sous-ensembles de citation

IM

Pagination

102634

Informations de copyright

Copyright © 2020 The Authors. Published by Elsevier B.V. All rights reserved.

Auteurs

Liesbet M Peeters (LM)

University MS Center, Biomedical Research Institute (BIOMED), Hasselt University, Agoralaan Building C, 3590 Diepenbeek, Belgium; Data Science Institute (DSI), Hasselt University, Agoralaan Building D, 3590, Diepenbeek, Belgium. Electronic address: Liesbet.peeters@uhasselt.be.

Tina Parciak (T)

Department of Medical Informatics, University Medical Center Göttingen, Von-Siebold-Straße 3, 37075, Göttingen, Germany.

Dipak Kalra (D)

Unit of Medical Informatics and Statistics, University of Gent, Gent, 9000, Belgium.

Yves Moreau (Y)

Department of Electrical Engineering (ESAT-STADIUS), KULeuven, Kasteelpark Arenberg, 10 3001 Leuven, Belgium.

Elisabeth Kasilingam (E)

European Multiple Sclerosis Platform, Rue A. Lambiotte, 1030, Brussels, Belgium.

Pieter van Galen (P)

European Multiple Sclerosis Platform, Rue A. Lambiotte, 1030, Brussels, Belgium.

Christoph Thalheim (C)

European Multiple Sclerosis Platform, Rue A. Lambiotte, 1030, Brussels, Belgium.

Bernard Uitdehaag (B)

Amsterdam UMC, Vrije Universiteit Amsterdam, Dept. of Neurology, MS Center Amsterdam, Amsterdam Neuroscience, po Box 7057, 1007, MB, Amsterdam, The Netherlands.

Patrick Vermersch (P)

University of Lille, CHU Lille, LIRIC-INSERM U995, Lille, France.

Niels Hellings (N)

University MS Center, Biomedical Research Institute (BIOMED), Hasselt University, Agoralaan Building C, 3590 Diepenbeek, Belgium.

Piet Stinissen (P)

University MS Center, Biomedical Research Institute (BIOMED), Hasselt University, Agoralaan Building C, 3590 Diepenbeek, Belgium.

Bart Van Wijmeersch (B)

University MS Center, Biomedical Research Institute (BIOMED), Hasselt University, Agoralaan Building C, 3590 Diepenbeek, Belgium.

Amin Ardeshirdavani (A)

Department of Electrical Engineering (ESAT-STADIUS), KULeuven, Kasteelpark Arenberg, 10 3001 Leuven, Belgium.

Ashkan Pirmani (A)

University MS Center, Biomedical Research Institute (BIOMED), Hasselt University, Agoralaan Building C, 3590 Diepenbeek, Belgium; Data Science Institute (DSI), Hasselt University, Agoralaan Building D, 3590, Diepenbeek, Belgium; Department of Electrical Engineering (ESAT-STADIUS), KULeuven, Kasteelpark Arenberg, 10 3001 Leuven, Belgium.

Edward De Brouwer (E)

Department of Electrical Engineering (ESAT-STADIUS), KULeuven, Kasteelpark Arenberg, 10 3001 Leuven, Belgium.

Christian Robert Bauer (CR)

Department of Medical Informatics, University Medical Center Göttingen, Von-Siebold-Straße 3, 37075, Göttingen, Germany.

Dagmar Krefting (D)

Department of Medical Informatics, University Medical Center Göttingen, Von-Siebold-Straße 3, 37075, Göttingen, Germany; University of Applied Sciences Berlin, Germany.

Stephanie Ribbe (S)

Novartis International AG. Forum 1. Novartis Campus CH-4056, Basel. Switzerland.

Rod Middleton (R)

UK MS Register, Swansea University, DSB, Swansea University, Singleton Park, Swansea, United Kingdom.

Alexander Stahmann (A)

German MS Register, MS Forschungs- und Projektentwicklungs - gGmbH, Krausenstraße 50, 30171, Hannover, Germany.

Giancarlo Comi (G)

Institute of Experimental Neurology, Ospedale San Raffaele, Via Olgettina, 48, 20132, Milan, Italy.

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Classifications MeSH

questionsmedicales.fr › Environnement et santé publique › Environnement › Écosystème › Multiple Sclerosis Data Alliance - A global...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Multiple Sclerosis Data Alliance - A global...
questionsmedicales.fr › Maladies du système immunitaire › Maladies auto-immunes › Maladies auto-immunes du système nerveux › Maladies démyélinisantes auto-immunes du SNC › Sclérose en plaques › Multiple Sclerosis Data Alliance - A global...
questionsmedicales.fr › Disciplines des sciences naturelles › Science › Recherche › Plan de recherche › Multiple Sclerosis Data Alliance - A global...