A national Australian Congenital Heart Disease registry; methods and initial results.

ABSTRACT:

Background

Although several National Data Registries for Congenital Heart Disease (CHD) exist, few are comprehensive and contemporary. A National Australian CHD Registry has been developed that aims to redress this by creating the first comprehensive data collection for CHD children and adults, initially across Australia.

Methods

We defined and collected a minimum dataset of demographics, diagnoses, and procedures from people with CHD presenting at participating quaternary CHD services Australia-wide. Data were collected from a range of clinical data sources. Diagnoses and procedures were standardised to the European Paediatric Congenital Code - Short List. Methodological limitations were carefully documented.

Results

From 8 participating institutions, an initial 359,

SUBMITTER: Nicholson C 

PROVIDER: S-EPMC11658562 | biostudies-literature | 2024 Sep

REPOSITORIES: biostudies-literature