The register, a centralised source of information on many aspects of MS across Europe, aims to address the recognised lack of relevant MS data at European level.
The information has been gathered from other registers, such as those collected by hospitals, MS societies and research centres. This project, spanning from 2011 to 2014, was co-funded by the European Commission.
The register thus creates a cross-border partnership for the safe and effective storage, analysis, interpretation and dissemination of such data.
Services available to patients vary widely across Europe; by collecting information about, and regularly assessing these disparities, the register can help to reduce them.
A more detailed understanding of the characteristics of patients and their MS across Europe could also provide new insights into the condition. Long-term collection of clinical data could also provide more information about the safety and effectiveness of disease-modifying drugs than would be gathered from relatively short clinical trials.
The register has been developed alongside, and builds on existing national databases, with the ultimate aim of providing a comprehensive resource of collected data for research and practice for all European countries, including those that do not currently have their own.
The first phase of the project comprises four studies with the aims of:
- finding out how MS may be changing over time and place
- finding out about any possible effect of month of birth on MS rates across Europe
- comparing access to and effectiveness of disease-modifying drugs across Europe, and assessing whether the effectiveness of these treatments varies by country
- assessing patients’ own perspectives on their quality of life, the impact of MS on this and on their ability to work.
With the first phase complete, the European Multiple Sclerosis Platform will now build on what was achieved between 2011 and 2014, and will encourage MS registers across Europe to adopt revised protocols of data pooling and analysis. The long term aim is to create a pan-European data pool to better assess the situation of people with MS and also to boost research and help shape policy in this field.
All project stakeholders are committed to ensuring that the momentum of the project is sustained, and that the project continues to grow and develop for the benefit of all concerned – and, in particular, for the tens of thousands of people affected by MS in Europe and beyond. There is also enthusiasm to promote the concept of databases of this sort among those working in disease areas other than MS, where a similar approach to data collection, handling and analysis could benefit patients.
To ensure development of the register beyond the current funding, the register consortium has also been exploring opportunities for support from EU and industry programmes.