The Australian Genetic Heart Disease Registry: Protocol for a Data Linkage Study

Area of Science:

• Cardiovascular Medicine
• Genetics
• Public Health

Background:

• Genetic heart diseases, like hypertrophic cardiomyopathy, cause significant morbidity and mortality.
• These autosomal dominant conditions affect 1 in 2 family members, termed at-risk relatives.
• Understanding healthcare utilization patterns for these individuals and families is crucial.

Purpose of the Study:

• To link the Australian Genetic Heart Disease (AGHD) Registry with population health data.
• To investigate healthcare use (hospitalizations, ED visits) in individuals with genetic heart disease and at-risk relatives.
• To identify disparities in outcomes based on disease, sex, socioeconomic status, and gene status.

Main Methods:

• Linked Australian Genetic Heart Disease (AGHD) Registry data (2007-2019) with NSW health datasets (hospitalizations, ED, mortality).
• Utilized probabilistic matching for data linkage.
• Planned descriptive statistical analysis stratified by diagnosis, age, sex, socioeconomic status, and gene status.

Main Results:

• Successfully linked 1384 AGHD Registry participants to extensive health records.
• Achieved linkage with 11,610 hospital records, 7,032 emergency department records, and 60 death records.
• Data assessment and harmonization completed; descriptive analysis is ongoing.

Conclusions:

• The study will provide insights into healthcare use patterns for genetic heart disease patients and relatives.
• It aims to identify disparities and barriers to care, highlighting specific health needs.
• Findings may reveal differences in healthcare access and utilization between sexes and socioeconomic groups.