About Us
CoHD Research
Research Approach
HeartKids are champions of the heart as Australia’s leading childhood-onset heart disease (CoHD) charity, and the only not-for-profit organisation dedicated to supporting and advocating for families impacted by CoHD. We are dedicated to fighting for more lives well lived. This vision will not be achieved without high quality research to provide the evidence for improved health care and outcomes for children, teens and adults impacted by CoHD. HeartKids is dedicated to supporting and promoting research and researchers and research organisations are key stakeholders identified in the HeartKids Strategic Plan.
HeartKids Research Commitment
HeartKids supports research into CoHD in alignment with its Strategic Plan by:
- Consumer Involvement Research Results Promotion
- HeartKids disseminates the results and impacts of research across our platforms and advocating for evidence-based care.
- HeartKids facilitates opportunities for the CoHD community to be involved in research. Their involvement may include:
- Helping direct research as part of the project team, providing a consumer lens on the development of research from the outset
- Sharing their views and experiences on a certain topic, treatment, service or other experience
- Being part of trials that are testing new treatment options to explore new opportunities for CoHD treatment
- Research Support
- HeartKids supports the collection and analysis of data about people with CoHD (registries) and provides support for other research grant applications that align with HeartKids Strategic Plan and the needs of the CoHD community.
- Monitoring and Evaluation
- HeartKids collaborates with research entities to ensure our own For Life Model of Support is regularly evaluated and reflects best practice.
To request assistance with study recruitment of consumers please click here.
To request HeartKids support on a research grant application please click here.
Note: HeartKids does not accept unsolicited applications for research funding.
Duty of care and responsibility
- HeartKids endeavours to ensure that all engagement through our research support is undertaken ethically and in line with our guiding principles. Reasonable checks are undertaken to ensure promoted projects have appropriate approval from a recognised body
- HeartKids is not responsible for externally administered research and is not liable for any claims concerning negligence, harm or oversight that might arise during the research
- Consent to take part and any questions or concerns regarding the research should be initially directed to the research team contacts provided
- HeartKids retains the right to remove listings/postings that do not meet the requisite criteria, and/or if complaints are received concerning the research project
CoHD Research Opportunities
Current research participation opportunities for individuals with CoHD and their families
Note: While HeartKids actively promotes various research projects, we do not conduct these studies ourselves. Your decision to participate, or not, in any research is independent and will not affect your relationship with HeartKids in any way.
