Research Projects – 2016

HeartKids commits $300,000 dollars to research projects in 2016
bringing the total commitment to research to date to $3 million dollars


HeartKids has announced the latest funding recipients through its Grants-in-Aid program, supporting vital research projects into congenital and acquired childhood heart disease.   The funding has been committed to better understand the unknown factors of childhood heart disease, of which there is no known cure.   The official announcement held in Brisbane on Wednesday 24 February follows HeartKids Australia’s Sweetheart Day, a national campaign to raise funds for the national charity’s support, research, advocacy awareness work.

HeartKids is the only not for profit organisation in Australia which funds research into the causes, treatment and management of childhood heart disease, which could not be possible without the support of its sponsors and donors.

Jayne Blake, CEO, HeartKids Australia, said: “The Grants-in-Aid program was established in 2011 with the support of our Founding Partner, Wilson HTM Foundation.

“Grants-in-Aid differs from our Research Project Grants, by allowing us to fund smaller projects from $20,000 up to $50,000.  The Grants-in-Aid projects also have a shorter duration of up to 12 months.

“Every day, 8 babies are born with childhood heart disease and every week 4 will die.  There are currently more than 32,000 adult Australians who have lived with a heart defect since childhood.  While surgery is not a cure, 50 per cent of those born with congenital heart disease will require an operation before their first birthday.

“Congenital Heart Disease is the leading cause of death of Australian children under the age of one and our organisation is dedicated to supporting research into its causes, treatment and management.”

The key research projects to be funded in 2016 are as follows:

  • Project: Comprehensive genetic analysis in neonates with CHD and associations with neurodevelopmental outcomes
    Principle Investigator: 
    Dr Gillian Blue

Project Institution: Heart Centre for Children, Sydney Children‘s Hospitals Network (Randwick and Westmead)

Project Description:  Up to 20 per cent of infants who undergo major cardiac surgery develop a neurodevelopmental disability (NDD) including developmental delay, motor and cognitive impairment and later school-based issues. Patient-specific gene changes play an important role, and there are many known genetic syndromes in which both cardiac and neurological problems occur. Using next generation sequencing technology this study will identify genes and pathways that may lead to the development of congenital heart disease (CHD) and NDD. Use of gene panels will allow earlier identification of at-risk infants and earlier referral to intervention programs to maximise their full potential.

  • Project: Neurocognitive outcomes in children and adults with a Fontan circulation

Principle Investigator:  Dr Rachael Cordina

Project Institution: Royal Prince Alfred Hospital and University of Sydney

 Project Description:  This project aims to investigate neurocognitive function in people with a Fontan circulation aged 13 years and over. Many children born with complex congenital heart disease (CHD) that results in a single cardiac pumping chamber are palliated with a Fontan operation. A small amount of literature suggests these people have reduced cognitive function and intelligence however this area is poorly characterised, especially in older children and adults. Aside from important implications for social functioning and life achievement, these problems also affect quality of life. A deeper understanding of contributors to altered brain function may help us to develop ways to optimise management strategies including timing and type of surgery. Furthermore, characterisation of the problem will also enable us to institute appropriate educational and psychological intervention for affected individuals if important abnormalities are identified.

  • Project: Nanovaccines against Rheumatic Heart Disease
    Principle Investigator:  Dr Rachel Stephenson

Project Institution: The University of Queensland
Project Description:  Untreated or recurring infection with Group A Streptococcus (GAS) causes 500,000 deaths worldwide each year. Similarities between GAS surface proteins and human heart proteins result in an autoimmune response, leading to acute rheumatic fever (ARF) and rheumatic heart disease (RHD). Children from Australian Aboriginal and Torres Strait Islander communities suffer the highest reported incidence of ARF and RHD in the world. We aim to prevent these deaths by making a vaccine from small, specific parts of GAS proteins so the body makes safe antibodies that prevent GAS infection without the risk of ARF or RHD.

  • Project: Parents’ role in buffering the emotional and neurobiological correlates of CHD treatment

Principle Investigator:  Associate Professor Nadine Kasparian

Institution: The University of New South Wales                                                                                            

Project Description:  Babies with complex congenital heart disease (CHD) often experience a range of uncommon and painful events, including surgery, invasive medical procedures, and limited interaction with their parents while in hospital. These experiences can have profound consequences for the developing child, with early life experiences shaping brain development, the body‘s immune system, and responses to stress.  This study will – for the first time in the world – examine how children with CHD respond emotionally and neurobiologically when presented with images of medical stimuli. We will also investigate whether parents serve as a ‘buffer’ to reduce their children‘s emotional and neurobiological responses.

  • Project: Families coping with child heart disease

Principle Investigator:  Professor Alun C Jackson

Institution: Heart Research Centre

 Project Description:  Childhood heart disease (CHD) can place families, particularly parents, under strain as they adjust to their child‘s condition and strive to cope with the impact of these changed circumstances. This follow-up project will trial a novel manualised parenting intervention, the Heartchild Family Coping Program based on the successful Parents can do Coping program, and heavily adapted for use with CHD families. The intervention uses the findings from two systematic reviews on CHD familial impacts and parenting programs for special needs children together with intensive interviews with parents, conducted in the first phase of this project, funded by HeartKids Australia.

  •  Project: Optimising heart function in survivors of surgery for congenital heart disease

Principle Investigator:  Jonathan Mynard

Institution: Murdoch Children’s Research Institute                                                                                                

Project Description:  Children with repaired congenital heart disease (CHD) may have hearts with a reduced pumping ability. To maximise the pumping action of the heart it would be useful to know what pressure it has to pump against. A method to measure this – central pressure, which is different to the pressure measured in the arm, would allow optimisation of medical treatment. To establish a new non-invasive method of measuring central pressure, we will simultaneously measure arm blood pressure with a cuff and central pressure with highly sensitive pressure sensors in 46 children undergoing routine catheterisation procedures.

MEDIA:

HeartKids has many families affected by childhood heart disease and medical professionals available for interview.

For interviews, further information or images please contact:

Kim Viney, Write Away Communication + Events

Ph: 02 9978 1400 or 0412 868 472, Email: kim_viney@writeaway.com.au

 

About HeartKids

HeartKids Australia is a registered national health charity. Working with health professionals, HeartKids provides lifelong support for those with childhood heart disease and their families Australia-wide. HeartKids also funds life-saving research, advocates and informs. To date, HeartKids Australia has committed more than $2 million to fund research into the causes, treatment and management of childhood heart disease.

 

New South Wales