- The Big MS Data network consists of multiple national and international MS registries, amounting to over 250,000 people living with MS in the network.
- The network allows joint analyses of very large sets of structured clinical data, and allows tracking of patterns in individuals’ health status, symptoms, and response to treatments over time.
- Such a large dataset can be used to study rare events like severe side effects, and for analysing groups of people who are often underrepresented in clinical trials, such as children and the elderly.
What is the Big MS Data network?
The Big MS Data (BMSD) network was initiated in 2014 and consists of the national MS registries of the Czech Republic, Denmark, France, Italy and Sweden as well as the international registry, MSBase.
The registries that form part of the BMSD network are well-developed, with reasonable coverage of local people living with MS, providing a reliable framework for the network.
Each of these registries is well-established as data sources for multiple scientific publications over the years. There are plans in place to expand the network by incorporating additional registries, provided they meet the specified criteria for BMSD.
Currently, the total number of people living with MS in the BMSD network amounts to over 250,000, which is an impressively large figure!
What are the aims of the BMSD network?
The BMSD network brings together leading registries and databases to allow joint analyses of very large sets of structured clinical data. Although each registry operates independently on different platforms, the similarities in data variables and structure allow the joint analysis of data.
The BMSD network aims to advance real-world MS research and contribute to clinical decisions. The network also contributes data towards the improved understanding of the course of MS and treatment options of MS.
How can the BMSD network help people living with MS and researchers?
The impact of BMSD extends to both people living with MS and researchers.
It seeks to improve the lives of people living with MS by collecting longitudinal clinical data. Longitudinal clinical data refers to information collected over time from the same individuals in a clinical study or healthcare setting.
This type of data provides insights into how various factors such as treatments, lifestyle changes, or disease progression, affect individuals’ health outcomes over an extended period. For example, the BMSD network can help provide better treatment insights, safety monitoring as well as improve care by helping clinicians make informed decisions.
Longitudinal data also allows researchers and clinicians to track changes, trends, and patterns in individuals’ health status, symptoms, and response to treatments over time using a large amount of data. It is valuable for understanding disease trajectories, assessing treatment effectiveness, and identifying risk factors.
So far, the BMSD network has published three scientific papers on pooled datasets as proof of concept for its collaborative design to drive home its success and contributions to the MS community.
What are the benefits of using a registry network compared to individual registries?
The BMSD network’s aspiration is to harness the data from over 250,000 people living with MS provided by the participating registries. This unprecedentedly large group offers a unique opportunity for comprehensive studies, promising insights and discoveries that were previously beyond reach.
For example, the network can be used to study rare events like severe side effects, and for analysing groups of people who are often underrepresented in clinical trials, such as children, the elderly, or those with specific health conditions like cancer.
In recent years, regulatory organisations such as the European Medicines Agency (EMA) have recognised registries as potentially useful data sources for obtaining further information on the safety and effectiveness of treatments after they have been approved for use.
The BMSD network is working to get approval from the EMA for post-approval safety studies, which will give them the authority to lead these important studies that regulators require.
Ultimately, the Big MS Data network aspires to be a leading engine in real world MS research and to support the development of new MS registries. Such efforts are expected to contribute to better outcomes for people living with MS.
