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

被引：13

作者：

Peeters, Liesbet M. ^{[1
,2
]}

Parciak, Tina ^{[3
]}

Kalra, Dipak ^{[4
]}

Moreau, Yves ^{[5
]}

Kasilingam, Elisabeth ^{[6
]}

van Galen, Pieter ^{[6
]}

Thalheim, Christoph ^{[6
]}

Uitdehaag, Bernard ^{[7
]}

Vermersch, Patrick ^{[8
]}

Hellings, Niels ^{[1
]}

Stinissen, Piet ^{[1
]}

Van Wijmeersch, Bart ^{[1
]}

Ardeshirdavani, Amin ^{[5
]}

Pirmani, Ashkan ^{[1
,2
,5
]}

De Brouwer, Edward ^{[5
]}

Bauer, Christian Robert ^{[3
]}

Krefting, Dagmar ^{[3
,9
]}

Ribbe, Stephanie ^{[10
]}

Middleton, Rod ^{[11
]}

Stahmann, Alexander ^{[12
]}

Comi, Giancarlo ^{[13
]}

机构：

[1] Hasselt Univ, Univ MS Ctr, Biomed Res Inst BIOMED, Agoralaan Bldg C, B-3590 Diepenbeek, Belgium

[2] Hasselt Univ, Data Sci Inst DSI, Agoralaan Bldg D, B-3590 Diepenbeek, Belgium

[3] Univ Med Ctr Gottingen, Dept Med Informat, Von Siebold Str 3, D-37075 Gottingen, Germany

[4] Univ Ghent, Unit Med Informat & Stat, B-9000 Ghent, Belgium

[5] KULeuven, Dept Elect Engn ESAT STADIUS, Kasteelpk Arenberg 10, B-3001 Leuven, Belgium

[6] European Multiple Sclerosis Platform, Rue A Lambiotte, B-1030 Brussels, Belgium

[7] Vrije Univ Amsterdam, Amsterdam UMC, Dept Neurol, MS Ctr Amsterdam,Amsterdam Neurosci, POB 7057, NL-1007 MB Amsterdam, Netherlands

[8] Univ Lille, CHU Lille, LIRIC INSERM U995, Lille, France

[9] Univ Appl Sci Berlin, Berlin, Germany

[10] Novartis Int AG Forum 1, Novartis Campus, CH-4056 Basel, Switzerland

[11] Swansea Univ, DSB, UK MS Register, Singleton Pk, Swansea, W Glam, Wales

[12] MS Forsch & Projektentwicklungs gGmbH, German MS Register, Krausenstr 50, D-30171 Hannover, Germany

[13] Osped San Raffaele, Inst Expt Neurol, Via Olgettina 48, I-20132 Milan, Italy

来源：

MULTIPLE SCLEROSIS AND RELATED DISORDERS | 2021年 / 47卷

关键词：

Real world data; multiple sclerosis; learning health system; collaboration; patient engagement; EUROPE;

D O I：

10.1016/j.msard.2020.102634

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

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.

引用

页数：4

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