The Norwegian Multiple Sclerosis Registry and Biobank

Abstract

Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system with unknown cause and various benefits from disease modifying therapies. Systematic recording of data into national MS registries is therefore needed to optimize treatment and define the pathogenesis of the disease. The Norwegian MS Registry and Biobank was established for systematic collection of clinical and epidemiological data, as well as biological samples. Data collection is based on informed consent from the individual patients and recordings by treating neurologists. All researchers have, by application, access to data and biological samples from the Norwegian Multiple Sclerosis Registry and Biobank. By this combined effort from both patients and healthcare personnel, the Registry and Biobank aims to facilitate research for improved understanding of disease mechanisms and improved health care in MS.

Risk of cancer among multiple sclerosis patients, siblings, and population controls: A prospective cohort study

“…The Norwegian Multiple Sclerosis Registry 22 was the primary source for identifying patients in this study. The registry, established in 2001, contains data for 8000 individuals with MS.…”

Body size and physical exercise, and the risk of multiple sclerosis

“…In this study, we compared the fitness test results as well as weight and height in individuals who developed MS in the years following the examination to parameters in those who did not develop the disease. Men who went on to develop MS were identified through linkage of the Norwegian Conscript Service database with the Norwegian MS registry 20 carried out by the governmental Norwegian agency, Statistics Norway, based on the personal identification number unique to every citizen/resident in Norway. As the conscription data are sensitive and therefore classified, we did not have access to the whole cohort in this study.…”

“…The Norwegian MS Registry was established in 2001 to facilitate patient care and promote MS research. 20 About 50%–60% of all MS patients in Norway were registered at the time of the linkage. Incident MS cases were registered at diagnosis by the treating neurologist.…”

Requirements of the National Multiple Sclerosis Disease Registry System: A Review of Experiences

“…quality of life measurement tools have been designed and developed for MS patients in order to monitor patients' activity and performance. Patient status information is provided by patient-reported questionnaire and only 4 registries use of this standard tools include MS impact scale (MSIS-29), (fss) fatigue severity scale, EQ-5D, visual functioning Questionnaire-25 ( VFQ-25), MS functional composite (MSFC) and fatigue scale for motor and cognitive functions (FSMCs) (17,18,27,36). In most registry systems used physician-based outcome measures such as the Expanded disability status scale (EDSS).…”

“…The only information the system does not record in lifestyle data section is patients' vitamin D levels. Vitamin D levels are a unique element of lifestyle information section that is only recorded by the Norwegian registry system (27). Also, the registries of Sweden (18), Denish MS(20), Denish treatment(21), Germany (25), Oslo(28), Australia(30), Italy(31), Iran (33), and Europe(16) have no information elements in lifestyle section.…”