National Multiple Sclerosis Registry Research Articles

Prevalence of Anti-JC Virus Antibody in Multiple Sclerosis Patients in Kuwait

Background. Multiple sclerosis (MS) therapeutics entered a new era after the development of anti-JC virus (anti-JCV) antibody assay that assesses the risk of development of progressive multifocal leukoencephalopathy (PML) in patients treated with natalizumab. Objective. To determine the prevalence of anti-JCV antibody among MS patients in Kuwait. Methods. Using the national MS registry, demographics and disease characteristics of MS patients who were screened for anti-JC virus antibody were collected. The prevalence of anti-JCV antibody seropositivity and its association with demographic and disease characteristics were evaluated. Results. Out of 110 screened MS patients for anti-JCV antibodies, 65.5% were females. Mean age and disease duration were 29.23 ± 8.55 and 5.39 ± 5.04 years, respectively. 47.3% of patients were already on natalizumab and 52.7% of patients were screened for stratification to either natalizumab or a different Disease Modifying Therapy (DMT). The overall prevalence of anti-JC virus antibody was 40%. Gender (P = 0.69), disease duration (P = 0.11), and number of natalizumab infusions (P = 0.64) were not associated with seropositivity. Patients aged ≥30 years were more likely to be seropositive (P = 0.01). Conclusion. The prevalence of anti-JCV antibody is slightly lower than what is reported in published studies. Seropositivity was associated with an increasing age of MS patients.

Epidemiology and clinical record of multiple sclerosis in selected countries: a systematic review

Multiple sclerosis (MS) is a chronic inflammatory autoimmune disease of the central nervous system mainly affecting young adults. The aim of this paper is to review the literature concentrating the main national MS registries in selected countries of the world. We performed a systematic review to determine the MS epidemiology reported on prevalence, incidence, environmental factors, treatment, social consequences of MS and neurological disability or progression among MS-affected people. We got the information on the high-MS prevalence in Sardinia, Sweden or Sicily and on the effects of MS treatment in United States of America, Italy or Germany. We emphasized environmental factors taking into account as MS risk factors. We concluded that there were many descriptions of MS status in particular countries, but they were often insufficiently detailed and not uniform enough to compare it. The paper indicated an importance of the MS epidemiology in the light of the healthcare or quality of life of the MS patients, but further research is needed to optimize this issue.

A need for national registries and international collaborative research in multiple sclerosis

There is a growing need to identify biomarkers for early diagnosis and treatment in multiple sclerosis (MS). Such markers may also be involved in the cause and pathogenesis of the disease. Established national MS registries have through several decades allowed data collection to facilitate MS research. The European MS Registry (EUReMS) is a recent international collaborative effort to ultimately promote MS research and quality in health care across European countries. International collaborations based on such initiatives can facilitate studies on new biomarkers in MS. Important studies on data from MS registries, as well as national- and international collaboration networks have been conducted. The symposium "National MS Registries--to improve health care and research in Multiple Sclerosis" held in Bergen, Norway, earlier this year aimed to highlight the need and benefit from national MS registries and promote international collaborative research in MS.

Assess, compare and enhance the status of Persons with Multiple Sclerosis (MS) in Europe: a European Register for MS

Persons with multiple sclerosis (PwMS) experience health-related quality of life (HRQoL) problems greatly differing across Europe, and the European Union (EU) faces deep inequalities in MS management from country to country. Through the establishment of a European MS Register (EUReMS), an effective action is proposed to improve the overall knowledge on MS and support effective intervention programmes at EU and national political level. EUReMS aims to achieve consensus on its mission and vision, to define existing data providers, to develop models driving future MS health policies and research, to develop an information technology (IT) infrastructure for a data set, to develop a European shared governance and to secure providers' data provision into EUReMS. EUReMS is meant to build on a minimum set of core data from existing national and regional population-based MS registries and from PwMS' perspectives. EUReMS' main partner is the European MS Platform (EMSP) acting in collaboration with associated and collaborating European partners. EUReMS was launched in July 2011. A Consensus Statement on purposes, vision, mission and strategies was produced in December 2011, and a comprehensive survey on existing MS data collections in Europe has been performed, and the EUReMS data mask is currently being discussed. EUReMS will represent a tool to provide up to date, comparable and sustainable MS data through an effective and credible register, which will encourage extensive knowledge building of MS, more equitable policies and higher standards in MS treatment and services.

Incidence and prevalence of multiple sclerosis in Norway

The incidence and prevalence of multiple sclerosis in several Norwegian counties have been assessed in a number of epidemiological studies since the first nationwide study covering the period from 1935 to 1948. Although the observations are not continuous, a large increase in incidence and prevalence is reported in these studies. The most remarkable incline has taken place in western and northern Norway. Parallel to the observed increase in occurrence of multiple sclerosis (MS), the Norwegian society has gone through notable changes from being a poor country immediately after World War II to an affluent, modern nation today. Thus, the healthcare system and neurological services have improved. Readily accessible services contribute to a quicker and better case ascertainment. Also, a lower threshold among the public to seek help for symptoms thought to originate in the CNS is probable. Environmental factors of possible biological importance in MS have also changed, for example diet, smoking habits and exposure to ultraviolet radiation, but the knowledge of change in these factors is so far mainly on the population level. To explore these questions, a comprehensive national MS registry combined with detailed information of assumed environmental risk factors operating in parallel in the society might be an important tool to further knowledge.

Fall Attributions Among Middle-Aged and Older Adults With Multiple Sclerosis

ObjectivesTo (1) explore the falls attributions of middle-aged and older adults with multiple sclerosis (MS); and (2) examine the personal, health, and MS-related factors associated with the 3 most common attributions. DesignA cross-sectional, descriptive study using data collected through a telephone interview. Falls attributions were obtained through an open-ended question to elicit participants' stories about their most recent fall. Recruitment was done through a national volunteer MS registry. SettingCommunity. ParticipantsPeople (N=354) who were ≥55 years of age were interviewed; 313 provided a falls story. Respondents were primarily married, community-dwelling women who had been living with MS for 21 years, on average. InterventionsNot applicable. Main Outcome MeasuresThe 3 most common fall attributions were used as dependent variables to address the second research objective. ResultsA total of 14 falls attributions were identified. The most common were balance (41.5%), lower extremity malfunction (31%), and assistive technology (AT; 29.7%). Falls control was significantly associated with the balance attribution (odds ratio [OR]=.51; 95% confidence interval [CI], .29–.88), no variables were associated with lower extremity malfunction attribution, and use of multiple mobility devices was significantly associated with the AT attribution (OR=3.78; 95% CI, 2.09–6.85). ConclusionsFindings highlight the complex nature of falls among middle-aged and older adults with MS and point to the need for comprehensive fall prevention interventions for this population. Further investigation of the role that perceived control over falls plays in this population is warranted.

Improved ability to work after one year of natalizumab treatment in multiple sclerosis. Analysis of disease-specific and work-related factors that influence the effect of treatment

Background: Multiple sclerosis (MS) constitutes one of the major diseases that leads to neurological impairment and as a consequence also reduces ability to work. Objectives: The purpose of this study was to analyze possible effects on work ability resulting from highly active anti-inflammatory treatment in MS. Methods: We analyzed the effects of introducing an anti-inflammatory treatment, natalizumab, in MS, on factors related to work ability. This was done through a comprehensive questionnaire distributed to all patients in Sweden starting on natalizumab treatment between June 2007 and May 2008, identified via the Swedish National MS registry. Results: MS patients who were receiving sickness benefit and were treated with natalizumab approximately doubled their working ability in relation to their total employment rate. We also documented a significant improvement of their ability to cope with work-related requirements after one year of natalizumab treatment, an improvement which was independent of the previous level of employment. Predictors of a positive effect on work ability were short disease duration, younger age and lower Expanded Disability Status Scale (EDSS) grade at treatment onset. Conclusions: Our data support the notion that early inflammatory control in MS is essential to preserve a healthy state in MS that counteracts the negative consequences of the disease both at a personal and at a societal level.

Summary

The collection of comprehensive demographic data on multiple sclerosis (MS) is essential for the proper assessment of epidemiology and provides the only useful data to demonstrate effects of therapy in the long term. Key MS registries continue to provide valuable insights into the natural history of MS. Randomized controlled trials provide important information on the effectiveness of disease-modifying therapies (DMTs), but they are limited only by their focus on a particular subgroup of patients with MS and may not extend into the long term. Regional and national MS registries allow the collection of diverse information on large groups of patients over the long term, regardless of disease type, disability, and treatment. Registries collect information about demographics, socioeconomic data, disease course, disability, medications, and hospitalization. However, it is apparent that registry studies can be limited by inherent problems in their governance, interpretation of their results, and when comparing information from different databases. Improvements to inter-registry consistency, in order to provide more uniform responses, may be an important consideration for the future. Important observational findings of the registries include the rate at which disability progresses in patients with MS, predictors of increased disability, and changes in lifespan associated with MS. Results from MS registries have shown evidence that Expanded Disability Status Scale (EDSS) progression after EDSS 4 is at a predictable rate and proceeds inevitably to severe disability.1,–,3 This suggests that treatment with DMTs early in the disease course is important in managing disability. Several registries indicate that 50% or fewer patients receive DMTs and a substantial proportion of patients may stop therapy …

National MS registries

This review gives an overview of national registries that are currently in use for patients with multiple sclerosis (MS). The large-scale registries described herein include the Danish MS Registry, the Norwegian MS Registry, the Swedish MS Registry, the Italian MS Database Network, the North-American NARCOMS Registry, and the German MS Registry. These MS registries are extremely helpful for studying disease characteristics in large populations and monitoring the long-term outcome of disease-modifying therapies. Furthermore, an almost complete ascertainment of cases provides information on the provision of treatments, services and supplies within a given area that may be used to compare different levels of health care within and between these regions. In the long-term, MS registries monitor the health care situation of MS patients over time including the implementation of guidelines relating to care and treatment, measure the improvements that have taken place, and reveal shortages and/or misalignment in health care services. The information gathered herein is not only useful for the long-term follow-up of the individual patient, but also for society as a whole by increasing understanding of and knowledge about MS and allowing national authorities and relevant parties to make informed and relevant decisions about MS.

Prevalence of Multiple Sclerosis in Canada: A Systematic Review

Studies of the prevalence of multiple sclerosis (MS) in Canada have generally been isolated to specific regions. Given the importance of multiple sclerosis as a cause of disability in adults, a comprehensive review of Canadian MS prevalence examining current data, interregional variation, deficiencies in knowledge and frontiers for research is timely. A systematic review of all studies addressing the prevalence of MS in Canada or regions within Canada, published in English or French since 1985, was conducted. Studies were identified using MEDLINE, EMBASE and bibliographic review. Ten studies were evaluated for methodological rigour and a test of heterogeneity across studies was performed and a measure of consistency (I2) estimated. Studies were generally of high quality. Nine were restricted to regions within Canada and one provided an estimated national prevalence based on self-reported cases. All reported a high prevalence (>50 per 100,000). Latitude and longitude gradients were not striking while assessment of heterogeneity confirmed that regional differences were unlikely to be the result of sampling variability. This review confirms Canada as a country of very high MS prevalence and it is the first study to demonstrate that variation in regional estimates represents true differences in prevalence within Canada. Avenues for future MS prevalence research, including adoption of a national MS registry, are proposed.

The Norwegian Multiple Sclerosis National Competence Centre and National Multiple Sclerosis registry - a resource for clinical practice and research

The Norwegian Multiple Sclerosis National Competence Centre was established at the Department of Neurology, Haukeland University Hospital, Bergen in 1996. Promotion of research, supervision and education of doctors and other health care professionals in Norway are the main responsibilities of the Centre. The centre has established national networks for MS care and research and has provided supervision and education of doctors and other health care professionals in Norway. Guidelines for diagnosis and treatment of MS have been established. The National Multiple Sclerosis Registry was established in 1998 and includes by January 2006 50-60% of all MS patients in Norway. Through a national collaboration, the registry aims for inclusion of a biobank unit for collection of cerebrospinal fluid and serum, DNA, and tissue samples.

Enrollment in a Multiple Sclerosis Clinical Trial: The EVIDENCE Experience

This paper describes the methods used to recruit patients for the EVIDENCE (EVidence for Interferon Dose-Effect: European-North American Comparative Efficacy) study, and the results of that recruitment. The majority of enrolled patients came from the investigators' clinic populations, with an additional 30% entering the study as a result of specific recruitment efforts. Local efforts, including referrals from colleagues, postings on bulletin boards, contacts with local Multiple Sclerosis Society chapters and newspaper advertisements, were the most successful recruitment tools. Mass mailings to local neurologists, referrals from a national multiple sclerosis registry, Web sites, and radio or television spots were less effective in recruiting eligible patients.