Research

HeartKids is the only research funding body in Australia that specifically drives research into the causes, treatment and management of congenital heart disease.

Our research agenda is simple: ‘To advance the diagnosis, treatment and prevention of congenital heart disease.’ This commitment complements our understanding that congenital heart disease patients require lifelong and specialised care from an eco-system of health professionals including special CHD Cardiologists, Surgeons, Mental Health Professionals to name but a few.

Last year, HeartKids launched its partnership with the Congenital Heart Alliance of Australia and New Zealand (CHAANZ) to implement the bi-national CHD Registry and National CHD Survey. This strategic collaboration demonstrates the strength of health
professionals and consumers working together and driving health sector reform through research and evidence.

Our 30-year commitment to funding world class research was substantially boosted by HeartKids Advocacy to the Australian Government with the announcement by the Hon. Greg Hunt, Minister for Health, that childhood heart disease would be the Medical
Research Future Fund’s Fifth Mission.

2018 marks the 11th anniversary of HeartKids’ commitment to research. With the support of our sponsors and donors, HeartKids is proud to have committed over $4 million of funding for research projects looking to unlock the mysteries of congenital heart disease to date, via our two programs: Grants-in-Aid and Project Grants.

The specific focus of these programs has been to:

  • Reduce mortality and/or morbidity of congenital/childhood heart disease

  • Reduce the incidence

  • Develop preventative measures

  • Improve early detection

  • Understand the causes and disease processes

  • Improve treatments and management

  • Gain a better understanding of the consequences of congenital/childhood heart disease and its treatment including the neurological,
    cognitive or social impacts on those affected and how these issues may be addressed.

Fontan Registry Funding Commitment

HeartKids has a long standing positive partnership with Fontan Registry of Australia and New Zealand and the Murdoch Children's Research Institution more broadly. As part of the HeartKids national Research Program last year we provided $25,000 in funding to assist with the implementation and management of the Registry.

The importance of longitudinal CHD research registries including the Fontan Registry can not be overstated. The vital data collected and analysed by researchers and clinicians provides a long term perspective on the health and well being of children, young people and adults who have had a Fontan operation. In the midst of this data is possible innovations that can prolong and enhance the lives of children alive today and yet to be born.

To this end and recognising the importance of the Fontan Registry we are pleased to announce that HeartKids is committed to raising $100,000 a year for the next three years to fund the Fontan Registry.

HeartKids has invested over $1.2 million in the Congenital Heart Alliance of Australia New Zealand Registry Project since 2016. Because of your fundraising and donations together with the tremendous support from The Kinghorn Foundation, CHD Registries are capturing data on the tens of thousands of Australians of all ages that have congenital heart disease.

Sadly, many young adults and adults have fallen between the cracks thus the first ever National CHD Survey, funded by HeartKids, launched last year is attempting to reconnect with people who have been lost to care.