Grants-in-Aid Awards Presentation 2015
A Message from the Chair
HeartKids Australia welcomes this opportunity to share the success of our National Research Program. We are united by a common goal: to support a childhood unaffected by childhood heart disease. It is important to note that HeartKids Australia is the only research funding body that specifically provides funds to drive worldclass research into the causes, treatment and management of childhood heart disease. Our National Research Program not only provides support for our annual Grants-in-Aid research projects, but also interacts nationally as part of a five year National Health & Medical Research Council Partnership Grant for Better Health and on joint programs with the National Heart Foundation. Currently, we are conducting a feasibility study to determine how to best establish a National Registry of Congenital Heart Disease to inform improved clinical interventions and service planning. Â The Grants-in-Aid Program supports research projects and capacity building in congenital and acquired heart disease. With the support HCF Research Foundation, Kiwanis Australia, HeartKids NSW, HeartKids Western Australia, HeartKids Victoria and HeartKids South Australia, we are delighted to be able to announce the research projects to be funded under our Grantsin-Aid Projects 2015. With your continued support, HeartKids Australia and their Research Advisory Committee will continue to support worldclass research to improve the lives and futures of those affected by CHD. Dr Lisa Selbie Chair Research Advisory Committee 3 HeartKids Australia: Grants-In-Aid Awards Presentation 2015
HeartKids Australia Grants-in-Aid Awards Presentation 2015 Order of Proceedings Welcome Introduction
Guest Speaker Award Presentations
Vote of Thanks
Mary Jung Wilson HTM Foundation Dr Lisa Selbie Chair, Research Advisory Committee Director, HeartKids Australia A/Prof Yves d’Udekem Murdoch Childrens Research Institute Dr Lisa Selbie Chair, Research Advisory Committee & Jayne Blake Chair, HeartKids Australia Jann Kingston Chief Executive Officer HeartKids Australia
Official Photographs
Formal proceedings will conclude at 7pm. Guests are welcome to stay and enjoy the hospitality of our hosts Wilson HTM Foundation.
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What is HeartKids? HeartKids is a charity focused on improving the lives and futures of children with childhood heart disease (CHD) and their families. We do this by providing quality information and support services, advocacy and driving world-class research. Welcoming a new baby should be an extremely special time, but for families of babies born with CHD, the emotional and financial stress is profound. While the scope of CHD is broad, some children born with heart defects will undergo open heart surgery in the first three days of their life. However, surgery is not a “cure”. Children with CHD will face unique challenges for their entire lives. This could include ongoing medical treatment and possibly repeated heart surgeries. Their physical and emotional development may be delayed which impacts on their capacity to live normal lives. More than 32,000 Australian adults have lived with a heart defect since childhood. CHD is a lifelong journey and it is our role to support these families through their various challenges and stages. As we say, once a heart kid, always a heart kid. HeartKids aims to raise the funds needed to provide this support, as well as advocate for heart kids, help fund research into the causes, treatment and management of heart defects and broaden awareness of CHD in Australia. Did you know? • Eight babies are born with a heart defect in Australia every day, that's one in a hundred and nearly 3,000 each year. • Childhood heart disease is the biggest killer of Australian children under one. • CHD can go undiagnosed until adulthood. • There are more than 32,000 Australian adults who have lived with a heart defect since childhood. • CHD is not a single condition. It includes a wide range of heart conditions that a child is born with or develops in childhood as a result of other illnesses. These conditions are not the result of lifestyle factors.
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HeartKids Australia Research Programs HeartKids, with the support of its sponsors and donors, is proud to have committed over $2 Million in funding for research projects looking to unlock the mysteries of Childhood Heart Disease (CHD). HeartKids funds research through two programs: Grants-in-Aid and Project Grants. The specific focus and aim of these programs has been to: • • • • • • •
Reduce mortality and/or morbidity from CHD Reduce the incidence of CHD Develop preventative measures to reduce CHD Improve early detection of CHD Understand the causes and disease processes of CHD Improve the treatments and management of CHD Gain a better understanding of the consequences of CHD and its treatment including the neurological, cognitive or social impacts on children affected by CHD and how these issues may be addressed.
The Grants-in-Aid program was established by HeartKids Australia in 2011 with the support of our Founding Partner, Wilson HTM Foundation. The program supports Australian research into congenital and acquired childhood heart disease. Grants-in-Aid differ from our Research Projects Grants which are intended to support large research grants over a two or three year timeframe similar to research project funding schemes operated by the National Health & Medical Research Council (NHMRC). Grants-in-Aid are intended to fund smaller projects (minimum $20,000 and maximum of $50,000 inclusive of GST) and have a shorter duration, with a maximum of 12 months. The grant application process is also simpler; the application forms shorter, the decision process faster and hence the process should be less demanding on applicants. Grants-in-Aid are intended to support and grow research capacity specifically directed to childhood heart disease.
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Funding Streams There are three potential streams of funding: 1. Small Research Projects. Funds may be sought for a small research project, to contribute to a larger (already mainly funded) project, to provide a seed funding for a new idea, to fund a pilot study or to assist with a small clinical trial. 2. Building Research Infrastructure. Funds may be sought for the purchase of capital equipment needed for research or for the building of or access to specialised infrastructure, e.g. bio banks, clinical registers, databases etc. 3. Research Capacity Building. Funds may be sought to assist research capacity building by providing access to special expertise to bolster research or provide research leadership development. It is a requirement that a substantial part of any research funded by HeartKids Australia be conducted in Australia.
HeartKids Australia Research Advisory Committee HeartKids has developed a peer-reviewed, transparent and efficient process to identify and allocate research funding. This ensures we obtain the best value from our funds and achieve the greatest impact for those affected by heart disease. We are assisted in this process by the Research Advisory Committee.
Meet the Research Advisory Committee Dr Lisa A. Selbie, Ph.D. Chair
Dr Lisa Selbie received her Ph.D. in Biochemistry, Molecular Biology and Cell Biology at Northwestern University and began her career as both a scientist and project leader at the Garvan Institute of Medical Research in Sydney studying the cloning and expression of neuropeptide receptor genes. Dr Selbie moved to England in 1994 where she worked at Queens Medical School at the University of Nottingham as a Wellcome Trust Research Fellow for four years, studying
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cell-based models of receptor signal transduction. Dr Selbie then moved to the US and for the past 11 years, has developed and delivered on-ground and online courses as a lecturer for Johns Hopkins University’s Advanced Biotechnology Studies Program MS/MBA Program. After returning to Sydney in 2003, Dr Selbie has also been a consultant with an Australian management consultancy in the biotechnology and healthcare sectors, an instructor with Biotech Primer Inc., a global company providing biotechnology training for the non-scientist. Dr Selbie has served as a member of the NSW AusBiotech Committee and is a Non Executive Director of HeartKids Australia in addition to her role as Chair of the Research Advisory Committee. Dr Anne Fletcher, BSc, MSc, PhD, FAICD, FAIMS Dr Anne Fletcher is a non-executive director, currently serving on the Chinese Medicine Board of Australia and the Therapeutic Goods Administration (TGA) Advisory Committee for Biologicals. Anne was previously on the boards of the Australian Red Cross Blood Service, the Australian Bone Marrow Donor Registry, the CRC for Vaccine Technology and HeartKids Australia. In her early career Anne worked in diagnostic laboratories. After undertaking postgraduate study she pursued a career in medical research at the University of Sydney and the Australian Red Cross Blood Service. Anne managed the Australian research program of the newly formed National Blood Service. In 2002 Anne established a health consultancy which provided advice to the biotechnology, health and medical research sectors. Anne has been instrumental in establishing several research funding schemes, including a research fund for the Australian and New Zealand Society of Blood Transfusion. Anne served on the inaugural Consultative Council for the Victorian Cancer Agency, a Victorian government-funded initiative to provide translational research funding to Victorian cancer research and health services. Anne joined the HeartKids Australia board in August 2010 and established the Research Advisory Committee which she chaired until June 30 2014. Dr Graham Nunn We are also privileged to have Dr Graham Nunn as a member of the committee.
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Dr Tom Gentles, Independent Advisor MBChB (Auckland), MD, FRACP Dr Tom Gentles was awarded a senior fellowship from the Heart Foundation of New Zealand in 1994 while working as a fellow in cardiology at The Children’s Hospital in Boston, and Harvard Medical School. He took up a position as senior Heart Foundation Fellow at Green Lane Hospital for three years. This tenure included research into heart muscle function. Following this he was appointed as a Consultant Paediatric Cardiologist at Green Lane Hospital and is currently Director of the Paediatric and Congenital Cardiac Service at Starship Children’s Hospital in Auckland New Zealand. Dr Gentles has maintained an active research role and continues to publish in a number of peer reviewed journals and is involved in multi-centre studies in New Zealand and Australian centres. He is an invited speaker at national and international meetings and is a New Zealand representative of the Australian and New Zealand Paediatric Cardiac Association. He is a fellow of the Cardiac Society of Australia and New Zealand and is the Chair of the Paediatric and Congenital Council of the Cardiac Society. Dr Jemma Lawson, Ph.D. Dr Jemma Lawson achieved her Ph.D. in Molecular Biology and Cell Biology at Flinders University of South Australia, in collaboration with the Cooperative Research Centre for Tissue Growth and Repair. Dr Lawson subsequently began her career in the biotechnology industry at GroPep Ltd, undertaking roles in research, investigating signal transduction pathways in mammalian cell culture, project management, as the team lead for commercial production of growth factors and receptors for scientific research, and scientific evaluation and seeking and assessing in-licensing opportunities for early phase clinical development. In 2006 Dr Lawson embarked on her current career path in clinical research, initially working for a small Australian Clinical Research Organisation (CRO), operating in a dual role as a Clinical Research Associate and a Clinical Project Manager. She currently works for a large Global CRO as the Clinical Team Leader, responsible for clinical operations across South Australia and Western Australia. In addition to resource management and personnel management, Dr Lawson continues to keep up to date with Australian clinical research regulatory and ethical requirements by continuing to work also as a Senior Clinical Research Associate on a selection of clinical trials across a broad range of therapeutic areas. 9 HeartKids Australia: Grants-In-Aid Awards Presentation 2015
Recipients of the 2015 Grants-in-Aid Program Outcomes following a cardiac procedure in the first six years of life Principal Investigator: Dr Samantha Lain Institution: Kolling Institute, University of Sydney Additional Investigators: A/Prof Christine Roberts, Dr Claire Lawley, Prof Gemma Figtree Dr Samantha Lain is an epidemiologist and NHMRC Early Career Research Fellow at the Kolling Institute, University of Sydney. She has a background in economics and worked in Institutional Banking for five years, before her interest in health research called her back to University in 2002 to pursue an undergraduate degree in Health Science. She began working in perinatal research in 2005, and completed her PhD in 2012. Sam has particular interest in infant and child health service utilisation associated with issues originating in the perinatal period. She has extensive experience in conducting perinatal research using linked population health data sets. These large datasets containing state-wide health data provide a unique opportunity to examine rare conditions such as congenital heart defects. Her research interests also include the costs of infant and child health service utilisation and longer term outcomes of perinatal complications, such as educational and developmental achievement. Project Description Up to 50% of children with congenital heart disease (CHD) will require operative management. This has a significant impact on these children, their families and those involved in providing care. In Australia, there is very little research about the health, educational and developmental outcomes of these children. Linked population health data provides a unique opportunity to evaluate the CHD population. This project aims to examine the frequency and annual trends of cardiac procedures in children in New South Wales, their subsequent health service utilisation and health outcomes, and educational and developmental outcomes. 10 HeartKids Australia: Grants-In-Aid Awards Presentation 2015
Exercise-induced hypertension in childhood following neonatal aortic coarctation repair Principal Investigator: Associate Professor Yves d’Udekem Institution: Murdoch Childrens Research Institute Additional Investigators: Dr Melissa Lee, Ms Taryn Luitingh, Dr Bryn Jones, Dr Remi Kowalski, A/Prof Michael Cheung, Dr Karin du Plessis, Ms Janina Chapman, Dr Sophia Weskamp, Ms Jane Koleff, Ms Erin Date Dr Yves d’Udekem was born in Canada but lived most of his early life in Belgium and graduated as a Medical Doctor in 1987 from the Université Catholique de Louvain, Belgium. He graduated as a surgeon in Belgium with overseas training in South Africa, Canada and the UK. In 2003 he completed his PhD and moved to Australia to work as a consultant at the Royal Children’s Hospital in Melbourne. Yves has published 150 articles in international, peer-reviewed journals. His research is centred on the long-term consequences of cardiac operations and is mainly retrospective and performed on large populations. Yves’ research has practical applications, as it aims to modify surgical techniques and refine management strategies of patients born with congenital heart disease. As a result of the research, a number of landmark publications have been published about Tetralogy of Fallot, the Fontan procedure, aortic valve repair and aortic arch repair. His current main focus of research is the long-term outcome of patients born with a single ventricle who have undergone a Fontan operation. Yves d’Udekem has founded The Australian and New Zealand Fontan Registry which today comprises 1300 patients. It is the only national and the largest database of such patients in the world. He acquired extensive study funding to do more of the most in depth research in these patients in this population. Project Description Aortic coarctation (narrowing of the aorta) occurs in 5 to 10% of all children with congenital heart disease. Surgery improves patient outcomes, but results in high blood pressure in 75% of adults, which is associated to a 20% risk of death by cardiovascular disease within 30 years. Early detection of hypertension in children may enable us to initiate therapy aiming at preventing the development of hypertension. We want to investigate the capacity of exercise testing and of a recently developed ultrasound analysis of the blood flow of the carotid artery as a way to detect early signs of hypertension. 11
HeartKids Australia: Grants-In-Aid Awards Presentation 2015
Functional health in adolescents who have undergone open heart surgery in infancy Principal Investigator: Dr Christian Stocker Institution: Lady Cilento Children’s Hospital Additional Investigators: Dr Rob Justo, Dr Ben Auld, Karen Eagleson, Susan Johnson, A/Prof Linda Gilmore Dr Christian Stocker is a Swiss born Paediatric (Cardiac) Intensivist, who was awarded a Doctor of Medicine (MD) by the University of Bearn, Switzerland in 1999. Trained in Zurich and Melbourne, Christian has held roles in paediatric intensive care units in children’s hospitals in Zurich, Melbourne and Brisbane. Christian is now the Deputy Director and Senior Staff Specialist in Paediatric Intensive Care Medicine at the new Lady Cilento Children’s Hospital (formerly the Mater Children’s Hospital) and a Senior Research Fellow for the Critical Care Research Group and the Paediatric Critical Care Research Group in Brisbane. Christian is currently the Teamleader Paediatric Cardiac Intensive Care, medical coordinator for the Queensland Paediatric Cardiac Service quality assurance program including morbidity & mortality reviews and data management & reporting. Christian has maintained clinical and experimental research since 2003 in perioperative management of children after congenital heart surgery, pathophysiology in extracorporeal life support, and long term functional health outcomes in paediatric (cardiac) intensive care patients. Project Description Based on research overseas, brain abnormalities and delayed neurologic development due to congenital heart disease and its treatment occur in up to 30% of patients. Neurologic development of 43 infants who underwent open heart surgery in Queensland between 1999 and 2001 were assessed at one and five years of age. Functional health (physical health, mental well-being, academic performance, social integration, and quality of life) of these children should now be assessed before finishing high school. This third assessment study will benefit the patients, and provide important new data on the burden of congenital heart disease on society in Australia.
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Clinical and genetic studies in children and families with cardiomyopathy Principal Investigator: Professor Chris Semsarian Institution: Centenary Institute, Sydney & Royal Children’s Hospital, Melbourne Additional Investigators: A/Prof Robert Weintraub, Dr Richard Bagnall, Dr Jodie Ingles Prof Chris Semsarian is a cardiologist with a specific research focus in the genetic basis of cardiovascular disease. He trained at the University of Sydney, Royal Prince Alfred Hospital, and Harvard Medical School. A focus area of his research is in the investigation and prevention of sudden cardiac death in the young, particularly amongst children and young adults. Prof Semsarian has an established research program at the Centenary Institute which is at the interface of basic science and clinical research, with the ultimate goal to prevent the complications of genetic heart diseases in our community. He has published over 140 peer-reviewed scientific publications, in the highestranking cardiovascular and general medical journals. He is the leader of a number of national studies in genetic heart diseases and sudden death, and collaborates widely both nationally and internationally. Prof Semsarian is the director of two specialty clinics at Royal Prince Alfred Hospital, the Genetic Heart Disease and Hypertrophic Cardiomyopathy Clinics. He has also been the primary supervisor of over 30 PhD, honours, and medical honours students since 2003, and is an active member of the mentoring program at the University of Sydney. Project Description Heart disease in children results in significant symptoms and can ultimately led to heart failure and premature death. One form of heart disease in children relates to abnormalities in the structure and function of the heart muscle, so called “cardiomyopathies”. Understanding the causes of cardiomyopathies is important to facilitate more accurate and earlier diagnosis, and in helping to predict clinical outcomes in children with cardiomyopathies. The proposed study will use the latest genetic technologies to identify the causes of cardiomyopathies in children. The study will improve our knowledge of these conditions in children, and directly impact on how we diagnose and care for children and their families with inherited cardiomyopathies.
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Measuring energetic efficiency in adult congenital heart disease using 4D flow MRI Principal Investigator: Professor Stuart Grieve Institution: Heart Research Institute, University of Sydney Additional Investigators: Prof David Celermajer, Dr Raj Puranik, Dr Fraser Callaghan Prof Stuart Grieve [BSc(Hons I) MBBS; DPhil(Oxon); FRANZCR] is a clinician/scientist, and is the Parker Hughes Chair of Radiology at Sydney University. He is also acting Director of Clincial Imaging at the Charles Perkins Centre and is a staff specialist Radiologist at Royal Prince Alfred Hospital. His primary clinical and research interests are imaging the heart and brain. The major focus of his cardiac imaging is using 4-dimensional flow to understand heart function in health and disease. His neuroimaging research is focused on the use of Connectomics to understand brain circuits. Stuart has a unique combination of research skills spanning clinical radiology, cellular biophysics, MRI physics, and imaging analysis. His career focus is the translation of imaging technology to both improve scientific understanding and clinical outcomes. He completed a BSc at University of Sydney in 1996 in Biochemistry, followed by DPhil in Magnetic Resonance Imaging at Oxford on a Rhodes Scholarship, followed by post-doctoral fellowships at Oxford in high-field NMR and high-field cardiac MRI before returning to Australia to continue his research and to undertake clinical training. He is now a Radiologist at Royal Prince Alfred Hospital specialising in cardiac and brain imaging and splits his time between clinical reporting and his research group in the Heart Research Institute at the Charles Perkins Centre. Project Description Adults with repaired congenital heart disease (CHD) require optimal medical and surgical care to avoid progressive dysfunction, ultimately leading to heart failure and possibly early death. In this study we will apply a revolutionary new technique, 4-dimensional flow MRI (4D-Flow) in order to better characterise the abnormalities of flow that are likely to contribute to long-term outcomes in adult CHD patients. We will focus on two well characterised groups– survivors with a Fontan type repair and those with repaired tetralogy of Fallot (TOF), aiming to collect data that improves our understanding of the physiology of and limitations associated with these conditions. 14 HeartKids Australia: Grants-In-Aid Awards Presentation 2015
HeartKids Australia Grants Program Proudly Supported by
Grants-in-Aid Founding Partner
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HeartKids Australia Inc Phone:02 9460 7450 Fax: 02 9439 8132 Street Address Suite 301, Level 2 / 39 Hume Street Crows Nest NSW 2065 Postal Address PO Box 149 Crows Nest NSW 1585 Email office@heartkids.org.au