National and regional registries for congenital heart diseases: Strengths, weaknesses and opportunities.
Adult congenital heart disease
Congenital heart disease
Quality of care
Journal
International journal of cardiology
ISSN: 1874-1754
Titre abrégé: Int J Cardiol
Pays: Netherlands
ID NLM: 8200291
Informations de publication
Date de publication:
01 09 2021
01 09 2021
Historique:
received:
17
03
2021
accepted:
03
05
2021
pubmed:
10
5
2021
medline:
5
8
2021
entrez:
9
5
2021
Statut:
ppublish
Résumé
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. 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. 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. 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.
Sections du résumé
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.
Identifiants
pubmed: 33965467
pii: S0167-5273(21)00819-6
doi: 10.1016/j.ijcard.2021.05.007
pii:
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
89-94Commentaires et corrections
Type : CommentIn
Informations de copyright
Copyright © 2021 Elsevier B.V. All rights reserved.
Déclaration de conflit d'intérêts
Declaration of Competing Interest The authors report no relationships that could be construed as a conflict of interest.