We are focused on understanding the clinical, genetic and psychological aspects of genetic heart diseases and working out ways to improve the care of these families.
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 of SCD is an underlying inherited heart disease. Hypertrophic cardiomyopathy (HCM) is the most prevalent, affecting up to 1 in 200 people, and highlights that these are not necessarily rare diseases.
The focus of our research is to improve the management and outcomes of families with genetic heart diseases. 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.
Attending to the psychological care needs of families is an area needing urgent attention. Our 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
Associate Professor Jodie Ingles GradDipGenCouns PhD MPH FHRS leads the Clinical Cardiac Genetic Group, Molecular Cardiology Program, Centenary Institute, Sydney Australia. She is an NHMRC Career Development Fellow and a cardiac genetic counsellor, Cardiology Department Royal Prince Alfred Hospital Sydney, and Associate Professor, Faculty of Medicine and Health, University of Sydney. A/Prof Ingles has more than 15 years experience working with patients and families with a variety of genetic heart diseases. Her research focuses on the clinical, genetic and psychosocial aspects of care of these families, and she has more than 100 publications in these areas. She co-leads two important national initiatives, the Australian Genetic Heart Disease Registry and the Australian Cardiac Genetic Testing Network. She was recently awarded the Cardiovascular Research Network (CVRN) Rising Star Ministerial Award and an NHMRC Excellence Award for the top ranked career development fellowship in 2018 (clinical, level 1).