Everyone living with MS has a unique insight into what it’s like to live with the condition. One person sharing information about their MS could benefit someone else on the other side of the world.
Now, growing numbers of MS organisations, patient organisations, hospitals and governments are recognising the value of gathering this data to create MS registries. While some registries collect clinical data from doctors, other registries collect information that people with MS themselves have shared about their condition by completing questionnaires and interviews. This self-reported information from people with MS is known as patient-reported outcomes (PRO).
MSIF, together with the European Charcot Foundation, is leading a global initiative in Patient Reported Outcomes for MS.
Each person’s PRO data can help to inform the research, diagnosis and treatment of people living with MS in their country or even across the entire world, in the case of multi-national registries. By contributing to an MS registry, people with MS can also improve their own treatment, since the data they provide allows healthcare professionals to track their condition more thoroughly over time. In some cases, patient and MS organisations use MS registries as a tool for patient advocacy, using the data to advocate for positive changes for people with MS.
Pooling and analysing the anonymised data from many hundreds or thousands of patients from clinical registries can also help reveal important patterns about MS disease course, the effects of treatments and the clinical challenges faced by people with MS. It is also becoming common for researchers to link data from the same patients from clinical databases and PRO registries. This can provide even more powerful research tools and deeper insights into the impact of MS and the management and treatment of MS.
MS registries put people living with MS at the heart of their own treatment and at the centre of MS research, empowering people with MS all over the world to help shape the future of MS research, diagnosis and treatment.
Here are some of the exciting examples of MS databases and registries in Europe and Australia that are inspiring countries in many other regions, including India, to develop their own databases.
The MSBase Registry is the first online global clinical MS database. Originating in Australia, MSBase is now an international collaboration that shares, tracks and evaluates patient characteristics and clinical outcomes in MS. Since its creation in 2004, MSBase has gathered more than 52,000 patient records from 33 participating countries. The project aims to improve our understanding of MS and improve healthcare for those living with MS by making thousands of patient records available for MSBase members (neurologists and their healthcare teams) to access electronically.
Big MS Data (BMSD)
Big Multiple Sclerosis Data (BMSD) is a fantastic example of how international collaboration can harmonise and pool national data to create multi-national databases. BMSD arose from an unmet need within the global MS research community for ‘big data’ – large quantities of information from many thousands of patients that can be collectively analysed to reveal meaningful patterns in MS. So, MSBase (Australia), OFSEP (France) and the Danish, Italian and Swedish national MS registries formed the BMSD Network and pooled their data to conduct these powerful analyses. By providing comprehensive, international data, BMSD aims to bring significant progress in MS research that will improve quality of life with MS.
Danish MS Registry
Established in 1956, the Danish MS Registry contains data, reaching as far back as 1921, on people diagnosed with MS. The Registry, which is funded by the Danish MS Society, aims to gather data on all Danish residents diagnosed with MS in order to advance MS research. The project is pioneering in its use of new technology to improve diagnosis and treatment, as shown by its online database system, which uses data to send instant online notifications directly to MS clinics.
Swedish MS Registry
The Swedish MS Registry was launched in 2001, when neurology departments at hospitals across Sweden came together to create a common system to register and record clinical data from people with MS. The Swedish MS Registry now combines both clinical and PRO data, since it has also developed a handy web portal for people with MS so that they can easily submit information about their condition either at home or during visits to MS clinics. The registry brings together more than 70 care facilitates across Sweden.
German MS Registry
There are around 240,000 people with MS living in Germany. After recognising a lack of reliable data on the prevalence of the disease and its underlying forms, the German MS Society (DMSG) sought to standardise data on the prevalence of MS and its social impact (e.g. on employment) by creating a national MS registry.
A total of 5 centers participated in the pilot phase from 2002 to 2004. Today, 180 centers are involved in the project, creating up to 32,000 data records each year.
UK MS Registry
The UK MS Society encourages people with MS to help generate new research by contributing to the UK MS Register, which combines data from clinical visits with data gathered as PROs, through a web portal. People can also join additional studies by simply completing an online survey or by accepting an invitation to join in a clinical study. The Register aims to vastly increase knowledge and understanding of fundamental questions about MS, such as how different types of MS affect different people and whether there could be regional differences in MS treatment and care.
The UK MS Society website explains, ‘the knowledge we gain from this study will also fuel campaigns for fair, relevant policy and improved healthcare for people living with MS.’
Australian MS Longitudinal Study
The Australian MS Longitudinal Study (AMSLS) is a survey-based research study that has been running since 2001 and now has over 3000 people completing research surveys each year. The study is designed to provide data of practical use for improving the lives of Australians living with MS. The study collects and analyses self-reported data on matters of importance to people living with MS, including employment and the economic impact of MS, quality of life, service needs, energy use (for keeping cool), symptom severity and medication use. This data is used to better understand the challenges of living with MS and facilitate the provision of services and advocacy for people with MS.
Atlas of MS
The Atlas of MS is another great example of how national and regional data can be used to create international databases that improve understanding of MS on a global scale and improve people’s quality of life with MS worldwide.
The Atlas is the most extensive worldwide study of the global incidence and prevalence of MS (epidemiology) and the global availability of and accessibility to resources for people with MS. First established in 2008, the Atlas was revised in 2013 and is scheduled for another update in 2020. You can access the 2013 global data here.