The MS Data Alliance (MSDA) is a global multi-stakeholder non-for-profit collaboration that aims to overcome the sociological and technical challenges that arise when scaling-up real-world MS data.
The alliance brings together regulatory decision-makers, people with MS/patient societies, data custodians, industry, clinicians and researchers to collaborate in the trustworthy use of real-world health data to accelerate data-driven insights necessary to transform the care of people with multiple sclerosis (MS). The mission of MSDA is to safeguard the crucial connection between the world of data science, technology and MS, and to raise awareness about the importance of research using real-world MS data.
The MSDA faces several challenges in achieving its mission. One of the challenges is the limited awareness among individuals on the relevance of using real-world MS data at scale, which results in limited engagement to contribute to the urgent needs within the ecosystem. To address this challenge, the MSDA launched an Educational Program on “How to set up a registry?” and a Fellowship Program in which the elected Fellow will receive tailored advice from the MSDA.
Another challenge is the different needs, issues and concerns of different stakeholders when it comes to real-world handling and analyses. This makes multi-stakeholder large-scale collaborative efforts complex and time-consuming. To overcome the technical challenges, the MSDA develops, disseminates and supports the implementation of tools to reduce the level of heterogeneity between different real-world MS data sources. The challenges encountered here are that real-world MS data sources are heterogeneous in size, maturity and depth. This heterogeneity greatly reduces the potential of collaborative research projects involving several real-world MS data sources.
The MSDA developed a metadata Catalogue to improve awareness of existing and planned cohorts, which allows end-users with particular study requirements or research questions to browse metadata profiles of MS real-world data cohorts.
The MSDA also developed a federated research infrastructure, which is a combination of software, scripts, data science pipelines, and hardware. It aims to technically support and speed-up large-scale collaborative real-world MS data efforts. The MSDA infrastructure was successfully used to support the Global Data Sharing Initiative on Covid-19 and is ready and fit-for-purpose for other urgent research questions.
In summary, MSDA’s efforts are essential to accelerate data-driven insights necessary to transform the care of people with MS.
Share a post!
Guidelines:
Email your draft to info.msdaalliance@gmail.com, including your picture and a brief biography. Once your draft has been reviewed by our team, we will contact you with further instructions
Designed with WordPress.com
MS Data Alliance 
Leave a comment