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The Danish Multiple Sclerosis Registry. History, data collection and validity
N Koch-Henriksen1, S Rasmussen, E Stenager
1Danish Multiple Sclerosis Registry, National Institute of Public Health, Department of Neurology, Aalborg Hospital.
Danish Medical Bulletin
|June 21, 2001
Summary
The Danish Multiple Sclerosis Registry, established in 1949, tracks over 14,000 multiple sclerosis (MS) cases. This long-term data collection is vital for understanding MS prevalence and improving patient care.
Area of Science:
- Epidemiology
- Neurology
- Public Health
Background:
- The Danish Multiple Sclerosis Registry has collected data since 1949.
- It continuously updates case information using standardized diagnostic criteria.
Purpose of the Study:
- To detail the establishment and operational history of the Danish Multiple Sclerosis Registry.
- To report on the registry's data scope, completeness, and validity up to January 1997.
- To highlight the registry's utility in multiple sclerosis research and healthcare planning.
Main Methods:
- Nationwide data collection on multiple sclerosis (MS) cases since 1949.
- Reclassification of cases using standardized diagnostic criteria (Poser et al).
- Data analysis of 14,441 registered cases with follow-up to January 1, 1997.
Main Results:
- 14,441 cases registered by January 1, 1997, with onset dates spanning from before 1948 to 1996.
- Estimated registry completeness at approximately 90%, varying by onset cohort.
- High diagnostic validity (94%) for definite MS cases confirmed by autopsy.
Conclusions:
- The Danish Multiple Sclerosis Registry is a robust tool for monitoring MS epidemiology.
- It provides valuable, unselected patient cohorts for diverse research applications.
- The registry supports informed decisions regarding MS treatment and care needs.