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The Danish Register of Congenital Heart Disease

Morten Olsen1, Jørgen Videbæk, Søren Paaske Johnsen

  • 1Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark. mo@dce.au.dk

Scandinavian Journal of Public Health
|September 8, 2011
PubMed

Insights

Long-term outcomes for adults with congenital heart defects (CHD) are understudied. The Danish Register of Congenital Heart Disease offers extensive data for crucial research into these conditions.

Area of Science:

  • Cardiology
  • Public Health
  • Medical Informatics

Background:

  • Congenital heart defects (CHD) are the most common birth defects, affecting 5-11 per 1000 live births.
  • The population of adults with CHD is growing, yet long-term outcome data remain scarce.
  • Existing research is limited by a lack of comprehensive, population-based datasets.

Purpose of the Study:

  • To highlight the research potential of the Danish Register of Congenital Heart Disease.
  • To underscore the need for long-term outcome studies in adult CHD patients.
  • To inform researchers about a valuable data resource for cardiovascular health studies.

Main Methods:

  • Utilizing data from the Danish Register of Congenital Heart Disease, established in 1963.
  • Including patients diagnosed with CHD and other heart conditions under 25 years of age.
  • Ongoing validation of overall and defect-specific data accuracy.

Main Results:

  • The Danish Register contains extensive longitudinal data on congenital heart disease.
  • Validation processes are currently underway to ensure data integrity.
  • The register facilitates comprehensive research into CHD patient outcomes.

Conclusions:

  • The Danish Register of Congenital Heart Disease, in conjunction with other national registers, presents significant research opportunities.
  • This resource is vital for advancing the understanding of long-term outcomes in congenital heart disease.
  • Further research utilizing this register can improve patient care and outcomes for adults with CHD.
Abstract

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