Making EUReMS count for people with multiple sclerosis

Abstract

Despite tremendous advances in multiple sclerosis (MS) research over the past few decades, the disease continues to place a substantial burden on patients, their families, and society. The European Register for Multiple Sclerosis (EUReMS), which aims to collect comparable and reliable data on MS from across the region, has the potential to fill some of the gaps in the understanding and management of this disorder. EUReMS was launched on July 1, 2011, and the first forum to discuss the project will be held at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) meeting in Amsterdam in October. Everyone who participates in EUReMS over the coming months and years must ensure that the most is made of this important opportunity. An estimated 2·5 million people have MS, and about a quarter of them live in Europe. The European Multiple Sclerosis Platform (EMSP), an umbrella organisation for MS societies from 34 countries, is coordinating EUReMS as a multidisciplinary partnership of clinicians, researchers, and patient groups. Following on from the Multiple Sclerosis Information Dividend (MS-ID), a pilot project showing the feasibility of collecting clinical, socio-economic, and quality-of-life data from six countries, the European Commission has provided almost €1 million to take EUReMS forward over the next 3 years. By June, 2014, EUReMS aims to have agreed on a core set of data for collection and to have gathered this information from national registries in 10 countries. The longer term aim is to provide a register for all European countries, including those that do not currently have such databases. The views of clinicians, researchers, and patients will all be important in shaping EUReMS over the next few months. If the right decisions are made in this initial phase, particularly regarding what data will be collected and how EUReMS will interact with other registries, the benefits will be great. The EMSP has previously shown that the services available to patients vary substantially across Europe, and regular assessment of these disparities should help to reduce them. Detailed data on the characteristics of patients and their MS across the region could provide new insights into the causes and varied natural history of the disease. Long-term collection of clinical information could eventually provide large-scale independent data on the safety and comparative effectiveness of disease-modifying drugs that cannot be captured during clinical trials, many of which last for only 2 years. Collaboration with existing MS registries will be crucial. EUReMS will build on national databases where possible, which will require a delicate balance between the standardisation of data and the willingness or ability of established registries to adapt their procedures. A particularly important partner will be the European Database of Multiple Sclerosis (EDMUS), which serves as an electronic medical record for people with MS in France and collects data in more than 40 countries. EDMUS has traditionally focused on clinical data collected by neurologists, whereas EUReMS is likely to include more patient-reported outcome measures. How these projects will work together needs careful thought, to avoid duplication of effort and data-collection fatigue among neurologists and patients. Representatives from non-European initiatives should also be consulted to maximise future compatibility. For example, the North American Research Committee on Multiple Sclerosis (NARCOMS) already collects self-reported data from more than 35 000 people and aims to be a global registry. In spring 2012, a National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDE) working group is due to recommend a set of standardised, validated measures for MS research, although the extent to which EUReMS and the MS CDE project will work together remains to be seen. Other issues to be resolved include how to ensure that the patients are representative, or at least a well defined subset, of the wider MS community. Patients with mild or very severe MS might be missed by data collection that relies on clinic attendance, and patients with limited access to a computer might be unable to complete regular online questionnaires. Quality control will be needed to ensure that the data are reliable, and access to the data for researchers will have to be balanced with patients' confidence in its security. Much remains to be decided about how EUReMS will work. Careful planning and collaboration in this early phase of EUReMS, and the long-term support of patients, neurologists, and funding bodies, will be essential to ensure that EUReMS fulfils its potential to benefit people with MS.