Table 2.

Data sets included in the Australian Genetic Heart Disease (AGHD) Registry data linkage study.

Data set	Purpose	Description	Variables
AGHD Registry	Cohort definition and linked data	National registry collecting clinical and genetic data of patients with genetic heart disease and their families	Demographics Sex Birth date (mm/yyyy) Ethnicity (based on the Australian Standard Classification of Cultural and Ethnic Groups [14]) Vital status (alive or deceased) Postcode Disease status (definite, possible, or at-risk) Smoker status Clinical history Clinical diagnosis Age at diagnosis Reason for diagnosis Genetic status (likely pathogenic, pathogenic variant identified, or not identified) Sudden cardiac events ever Heart failure ever Syncope ever Nonsustained ventricular tachycardia ever Atrial fibrillation ever Left ventricular outflow tract obstruction ever Interventions (implantable cardioverter defibrillator, pacemaker, ablations, myectomy, and heart transplant) Family history Investigations Echocardiography parameters Electrocardiography parameters
NSWa Admitted Patient Data Collection	Linked data	Records all admitted patient services provided by NSW public hospitals, private hospitals, and private day procedure centers	Demographics Sex Birth date (mm/yyyy) Country of birth Residential statistical local area (SLA) at admission Health insurance on admission Episode of care Episode start date Episode end date Condition onset flag Diagnosis codes ICD-AMb (up to 50) Australian Refined Diagnosis-Related Group Hours in intensive care unit Hours on mechanical ventilation Mode of separation Procedure codes ICD-AM (up to 50) Procedure date Service-related group Facility information Hospital type Local health district (LHD) Facility identifier Facility transferred to Facility transferred from
NSW Emergency Department Data Collection	Linked data	Provides information about patient presentations to the emergency departments of public hospitals in NSW	Demographics Sex Birth date (mm/yyyy) Country of birth Residential SLA at admission Health insurance on admission Episode of care Episode start date and time Episode end date and time Diagnosis code ICD-AM (up to 50) Type of visit Mode of separation Referred to on departure Facility information LHD Facility identifier
NSW Registry of Births, Deaths, and Marriages	Linked data	Includes death registrations	Birth date (mm/yyyy) Death date (mm/yyyy) LHD at death
Australian Coordinating Registry Cause of Death Unit Record File	Linked data	Includes death registrations	Death date (mm/yyyy) Death age Place at birth State/territory of usual residence Sex Place of occurrence for external cause of death Underlying cause of death ICD code Contributing cause of death ICD codes (up to 20 comorbidity codes)

^aNSW: New South Wales.

^bICD-AM: International Statistical Classification of Diseases and Related Health Problems, Australian Modification.