The need for a multiple sclerosis registry in the Gulf Region

www.neurosciencesjournal.org M sclerosis (MS) is a chronic inflammatory demyelinating disease of the central nervous system. Multiple sclerosis has become one of the most prevalent neurological disorders among adults aged 20-40 years. The MS prevalence rates are expected to increase with time. The Gulf region was previously thought to be a low-risk region for the development of MS. However, recent reports from Dubai, the United Arab Emirates, and Qatar showed an increase in both the prevalence and incidence rates of MS.1,2 It is expected that other Gulf countries would show a similar increase in the rates, given improvements in both case ascertainment and case definitions. Diagnostics and therapeutics for MS have certainly evolved over the last decade, resulting in increased awareness among health care providers, treating physicians, and patients. Our objective is to discuss the need to establish a MS registry in the gulf region by addressing the advantages of having a unified database in our region. Despite tremendous advances in MS research over the past few decades, the disease continues to place a substantial burden on patients and their families, health care systems, and the society. The clinical presentation and characteristics of MS in the Middle East are similar to the disease’s features in Western countries.3 There is no available data on the natural history of MS in the Gulf region, and it may differ from the known history of MS in Western countries, given differences in genetic and environmental predispositions. There is increasing interest in studying disease characteristics in large cohorts after different disease-modifying therapies (DMTs) were introduced to assess changes in the natural history of MS after treatment, and to monitor the future long-term outcomes of disease progression. Disease registry generation is a systemic process of collecting secondary data related to patients with a specific diagnosis or condition, or who have undergone a specific procedure. Disease registries are a valuable source of information for health care policy makers and planners. In contrast to clinical databases, registries collect a larger amount of core data and contain information on demographics, disease course, disability, and medication, and on other important socioeconomic data, hospitalization, mortality rates, and the use of health care services.4 Data from disease registries help to improve health care delivery and research. An MS registry in the Gulf region would serve as an important source of national and regional epidemiological data. The MS registries would provide the opportunity to follow populations of MS patients over decades and focus on certain groups, such as patients with aggressive or progressive disease and the pediatric population. Most randomized clinical trials (RCTs) focus on a particular subgroup of MS patients, namely, those with only a relapsing-remitting course, those with a certain degree of disability, and/or those who have not received previous treatment (naive patients).5 However, regional and national registries would include nearly all patients within the area regardless of the disease course, disability measures, or treatments, which would result in the comprehensive assessment of the demographics of an MS population. Detailed data on the characteristics of