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The Danish Multiple Sclerosis Registry.

Melinda Magyari1,2, Hanna Joensen1, Bjarne Laursen3

  • 1Department of Neurology, The Danish Multiple Sclerosis Registry, Rigshospitalet, Glostrup, Denmark.

Brain and Behavior
|October 31, 2020
PubMed
Summary

The Danish Multiple Sclerosis Registry, established in 1956, tracks over 30,000 cases. This vital resource supports research into multiple sclerosis (MS) epidemiology and treatment effectiveness.

Keywords:
data sourceepidemiologymultiple sclerosisobservational studiesreal world dataregistry

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Area of Science:

  • Neurology
  • Epidemiology
  • Public Health

Background:

  • The Danish Multiple Sclerosis Registry is the world's oldest continuously operating national MS registry.
  • It plays a crucial role in understanding multiple sclerosis (MS) epidemiology and patient outcomes.

Purpose of the Study:

  • To provide a comprehensive overview of the Danish Multiple Sclerosis Registry.
  • To detail its history, data collection methodologies, and scientific contributions.
  • To highlight its national and international research collaborations.

Main Methods:

  • The registry employs rigorous data collection procedures, ensuring completeness and quality.
  • It addresses legal, ethical, and data protection considerations.
  • Funding and quality optimization strategies are detailed.

Main Results:

  • As of May 2020, 30,023 cases of clinically isolated syndrome and MS were registered since 1956.
  • The prevalence rate was approximately 284 per 100,000 population.
  • In 2010-2019, an average of 649 new MS cases were diagnosed annually, with 48.1% on disease-modifying therapy by May 2020.

Conclusions:

  • MS registries are essential for epidemiological research, quantifying disease burden, and informing healthcare decisions.
  • The Danish MS Registry has facilitated numerous studies on MS incidence, mortality, risk factors, comorbidities, socioeconomic outcomes, and treatment effectiveness.
  • It serves as a valuable data source for both observational and epidemiological research beyond clinical trials.