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The use of epidemiological multiple sclerosis registers in research: the Danish MS Registry
N Koch-Henriksen1, E Stenager, B Laursen
1The Danish Multiple Sclerosis Registry, Rigshospitalet 7801, Blegdamsvej 9, Copenhagen, Denmark. koch-henriksen@stofanet.dk
Introduction:
The claim of detection of several environmental risk factors for multiple sclerosis (MS), some of them new, makes the research of population-based MS registers for critical review or confirmation of alleged associations more relevant than ever before.
Aims:
To present examples of the use and important contributions from the Danish MS Registry (DMSR) over decades.
Methods:
The DMSR has through more than six decades registered virtually all patients with MS in Denmark, using multiple sources of notification and has been used for descriptive epidemiology, follow-up studies, studies of comorbidity and 'historical prospective' studies of proposed risk factors for MS.
Results:
Based on research from DMSR, we have found that female incidence of multiple sclerosis in Denmark has increased considerably; that patients with MS loose their working ability and their spouses/partners at a much higher rate than the background population; that patients with MS have a considerable excess mortality which seem to have decreased over several centuries decades - not centuries, also before the era of disease modifying treatment; that fewer patients with MS than expected from the population get diagnosed with or die from cancer; that infectious mononucleosis increases the risk of MS; that head trauma and a number of occupational exposures, for example, nurses, utility workers, exposure to solvents do not carry an enhanced risk of MS.
Conclusion:
The DMSR has, as an example of long-lasting population-based registers, proven to be an effective tool for studying MS epidemiology. In future, the need for this kind of registers will continue, as biology or immunology cannot stand alone.
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