Clinical, Genetic and Psychosocial Aspects of Inherited Heart Disease
- Years funded:
- 2016 - 2019
Sudden cardiac death (SCD) occurs in 35,000 people each year in Australia (i.e. 1 death every 15 minutes) and the impact in life-years lost is greater than all individual cancers and most other leading causes of death.
In those aged 35 years and under, the most frequent cause is an underlying inherited heart disease. Hypertrophic cardiomyopathy (HCM) is the most prevalent, affecting up to one in 200 people, and highlights that these are not necessarily rare diseases.
The focus of Dr Jodie Ingles's research is to improve the management and outcomes of families with genetic heart diseases. This stems from her 11 years of experience as a cardiac genetic counsellor in the Hypertrophic Cardiomyopathy and Genetic Heart Disease Clinics, and her seven years research experience in this field.
There are many aspects of care that are not well understood, and contemporary disease management guidelines are based mostly on expert consensus opinion rather than evidence. Further delineating the genetic basis of these diseases, as well as improving clinical outcomes, are key areas. For example, better risk prediction for SCD and better understanding the influence of socioeconomic status on poor clinical outcomes is needed.
Finally, attending to the psychological care needs of families is an area needing urgent attention. Dr Ingles's direct experience with the patients will ensure that research translation is a priority, with a goal to improve care of these families.
Associate Professor Jodie Ingles
|Institute:||University of Sydney|