National and regional registries for congenital heart diseases: Strengths, weaknesses and opportunities

Int J Cardiol. 2021 Sep 1:338:89-94. doi: 10.1016/j.ijcard.2021.05.007. Epub 2021 Jun 24.

Abstract

Background: We aim to establish a new and informative bi-national Registry for Congenital Heart Disease (CHD) patients in Australia and New Zealand, to document the burden of disease and clinical outcomes for patients with CHDs across the lifespan. When planning for the implementation of this Registry, we sought to evaluate the strengths and weaknesses of existing national and large regional CHD databases.

Methods: We characterised 15 large multi-institutional databases of pediatric and/or adult patients with CHD, documenting the richness of their datasets, the ease of linkage to other databases, the coverage of the target cohort and the strategies utilised for quality control.

Results: The best databases contained demographic, clinical, physical, laboratory and patient-reported data, and were linked at least to the national/regional death registry. They also employed automatic data verification and regular manual audits. Coverage ranged from around 25% of all eligible CHD cases for larger databases to near 100% for some smaller registries of patients with specific CHD lesions, such as the Australia and New Zealand Fontan Registry.

Conclusions: Existing national and regional CHD databases have strengths and weaknesses; few combine complete coverage with high quality and regularly audited data, across the broad range of CHDs.

Keywords: Adult congenital heart disease; Congenital heart disease; Quality of care.

MeSH terms

  • Adult
  • Australia / epidemiology
  • Child
  • Databases, Factual
  • Heart Defects, Congenital* / diagnosis
  • Heart Defects, Congenital* / epidemiology
  • Heart Defects, Congenital* / therapy
  • Humans
  • New Zealand / epidemiology
  • Registries