MS Data Alliance

The MS Data Alliance is a global multi-stakeholder non-for-profit organization that strives to overcome the sociological and technical challenges that arise with the transformation of real-world MS data into real-world evidence, which will provide necessary insights to improve the care of people with Multiple Sclerosis (MS). Within the MS Data Alliance ecosystem, we build bridges between all stakeholders and provide them with the necessary tools for their specific challenges.

Because data can transform the care of people with Multiple Sclerosis.
We are a multi-stakeholder collaboration working to accelerate research insights for innovative care and treatment for people with MS.

About Us

Who We Are

Our Mission

The MS Data Alliance is a global multi-stakeholder non-for-profit collaboration that strives to overcome the sociological and technical challenges that arise when scaling-up real-world MS data.

Our Vision

We envision a world in which multiple stakeholders collaborate in the trustworthy use of real-world health data to accelerate data-driven insights necessary to transform the care of people with MS.

Our values and guiding principles

Governance

Core Group

Our Core Group has the ultimate responsibility for the operations of the MS Data Alliance and is responsible for the strategic direction of our organization, its financial succession and its relationship with their partners

Dagmar Krefting
University Medical Center Göttingen (UMCG)
Germany

Dipak Kalra
President i~HD
Great Brittain

Giancarlo Comi
President European Charcot Foundation (ECF)
Italy

Jana Hlavacova
CEO EMSP
Czech Republic

Jan Samyn
General Manager MS Data Alliance
Belgium

Liesbet M. Peeters
UHasselt - Chair MS Data Alliance
Belgium

Yves Moreau
KU Leuven (ESAT)
Belgium

Advisory Group

The Advisory Group consists of carefully selected key opinion leaders representing the different stakeholders and is therefore the key scientific steering body of the MSDA (give formal advice to Core Group)


Aki Rintala
LAB University of Applied Science, Lahti
Finland

Alexander Stahmann
German MS-Register by the German MS Society
Germany

Alexey Nikolaevich Boyko
RUCTRIMS
Russia

Amber Salter
UT Southwestern Medical Center
USA

Anne Helme
Multiple Sclerosis International Federation
United Kingdom

Bassem I. Yamout
MENACTRIMS
Libanon

Bernard Uitdehaag
Multiple Sclerosis Center Amsterdam
The Netherlands

Bimsara Senanayake
SLCTRIMS
Sri Lanka

Bram Platel
MS in beeld
The Netherlands

Carlos Navas
LACTRIMS
Colombia

Clare Walton
Multiple Sclerosis Society
United Kingdom

Elena H. Martinez De Lapiscina
European Medicine Agency
Spain

Francis Arickx
National Institute for Health and Disability Insurance
Disneyland France

Hollie Schmidt
Accelerated Cure Project, Inc
USA

Jefferson Becker
BCTRIMS
Brazil

Joanna Dronka
Person living with MS
Poland

Juan Ignacio Rojas
Multiple Sclerosis Center Buenos Aires
Argentina

Kazuo Fujihara
PACTRIMS
Japan

Magd Zakaria
Egyptian Society of MS
Egypt

Nikolaos Grigoriadis
Hellenic Academy of Neuroimmunology
Greece

Peter Rijnbeek
Erasmus University Medical Center
The Netherlands

Rod Middleton
United Kingdom Multiple Sclerosis Registry
United Kingdom

Ruth Dobson
Optimise: MS
United Kingdom

Shi Fu-Dong
Center for Neuroinflammation, Beijing Tiantan Hospital
China

Xavier Montalban
Multiple Sclerosis Center of Catalonia (CEMCAT)
Spain

Operational Team

The MSDA operational team is responsible for daily operations and to execute the work plan as agreed upon by the Core Group, formally advised by the Advisory Group

Ashkan Pirmani
UHasselt - Data Scientist/MLOps


Brenda Hernandez Bulnes
UHasselt - Communication & Dissemination Officer


Fabiana Totaro
ECF - Scientific Secretariat


Gunther Meyer
Liberius - IP Lawyer


Ilse Vermeulen
UHasselt - Research Group Manager


Lorela Lohan
ECF - Project Manager


Lotte Geys
UHasselt - Data Governance Manager


Matteo Principe
ECF - Project Manager


Nasim Shabani
UHasselt - Full Stack Developer


Tina Parciak
UHasselt - Minimal Datasets & Common Data Models

Academy

In our academy, it’s all about the people (events, webinars, seminars, networking, mentorship and relationships)

Educational Program

One of our key strategic objectives is to promote trustworthy and transparent practices in the use of real-world MS data. In 2022, we prioritise delivering an Educational Program touching upon the question “How to set-up a registry”. We will test-trial this program in collaboration with representatives of Central-Eastern-Europe (CEE) and Latin-America (LATAM).

Topics

  1. Why to set-up a registry?
    → Value of real-world MS data
  2. What to collect?
    → Minimal datasets and recommendations for data collection
  3. How to collect?
    → Data acquisition software systems
  4. How to ensure privacy and trust of stakeholders?
    → Storage, data protection and governance
  5. What’s next?
    → Inspiring grant momentums in the real-world MS data arena?

Fellowship Program

By interacting with our stakeholders, it became clear that a more personalized and tailored approach would be appreciated following the educational program.

In the past, indeed, we successfully supported data partners involved within the COVID-19 in MS Global Data Sharing Initiative with questions they had. In doing so, we have witnessed the impact of 1-on-1 interactions. Therefore, we aim to launch a MSDA Fellowship Program in 2025.

Toolbox

With our toolbox, we focus on results (dictionaries, software, hardware, tools, protocols, processess)

MSDA Catalogue

Within the MS Data Alliance, we strive to overcome challenges that arise with scaling up real-world MS data. It is important to scale-up because you need a lot of data to be able to reach insights on a personalized level. Finding the data sources you’re interested in, can be very hard and time-consuming. Therefore, the MSDA Catalogue, which was launched in 2019, could be useful since it aims to reduce the time needed to discover real-world MS datasets.

The Catalogue consists basically of questionnaires that can be completed by MS registry owners or other initiatives that collect real-world MS data. The answers to the questionnaires give an impression on how the registry or initiative works, what variables they collect, how they do that, about the data quality and governance. So, it shows a lot of useful information about the data they collect, without showing the real data. Thereby, it allows end-users with particular study requirements or research questions to browse metadata profiles of MS real-world data registries/cohorts.

In addition to reducing the time needed to discover real-world MS datasets and therefore to facilitate collaborative research, the Catalogue is a valuable educational tool as well. The metadata shared by the registries/cohorts give a first impression on the level of awareness and experience when it comes to registries/cohorts. The metadata could inspire others while browsing the Catalogue or during our academy activities, e.g. the educational program on “How to set-up a registry”, which aims to introduce some important concepts related to real-world data handling as well as to inspire through the use of success stories and testimonials.

Currently, 42 registries/data initiatives are already part of the Catalogue, which is fabulous. However, we would like to have as many continents and countries to be part of it. If you would like to become part of the MSDA Catalogue or if you could bring us into contact with additional MS data initiatives, don’t hesitate to contact us (lotte.geys@msdataalliance.com).


About
The MS Data Alliance is a global non-for-profit multi-stakeholder collaboration acting under the umbrella of the European Charcot Foundation, financially supported by a combination of industry partners, recently including Novartis, Merck, Biogen, Janssen, Bristol Myers Squibb and Roche.

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