I am an epidemiologist using record linkage to investigate the causes and consequences of developmental disabilities such as birth defects, intellectual disability and autism and to identify possibilities for their prevention and amelioration.
Population-based Data Linkage To Investigate The Health And Development Of Children Born After IVF
Funder
National Health and Medical Research Council
Funding Amount
$321,972.00
Summary
In Australia 1 in 25 births are conceived from IVF treatment and this is increasing. My research program will use a comprehensive set of linked population data to address key questions in the IVF field following major changes to IVF practice in the last decade. This research (examining fetal growth, birth defects, intellectual disability and school achievement) has the potential to influence clinical practice and will greatly improve the information available for pre-treatment counselling.
Genetic, Family And Social Determinants Of The Burden And Outcome In Rett Syndrome: A Population-based Investigation
Funder
National Health and Medical Research Council
Funding Amount
$332,550.00
Summary
Rett syndrome is a severe disorder of the nervous system mainly affecting females. At birth children with Rett syndrome often seem normal but in their second year lose skills. With time it becomes clear that they are severely intellectually and physically handicapped. In 1999 the link between Rett syndrome and a mutation in the gene, known as MECP2, was found. In Australia since 1993, we have had a register of basic information on all girls and young women diagnosed with Rett syndrome. Over thre ....Rett syndrome is a severe disorder of the nervous system mainly affecting females. At birth children with Rett syndrome often seem normal but in their second year lose skills. With time it becomes clear that they are severely intellectually and physically handicapped. In 1999 the link between Rett syndrome and a mutation in the gene, known as MECP2, was found. In Australia since 1993, we have had a register of basic information on all girls and young women diagnosed with Rett syndrome. Over three quarters of the register s 248 cases have now been genetically tested. In 2000 and again in 2002, extra information on ability to do everyday tasks, behaviour, hand function, medical conditions, and use of health and education services was collected. In 2002 questions on family well being were also included. From 2004 to 2007, further information will be gathered on function, health and well being of the affected child and their family. This will be by telephone interview, questionnaire, video recording, existing medical records, clinical assessments and tests. This will include in 2004 completion of calendars which will provide information needed to estimate health and medical care costs for these children. Similar information by questionnaire and calendar will also be collected from the parents of children with Down syndrome in 2004. The information will be used to compare the social and financial burden of Rett syndrome with Down syndrome, a commoner cause of intellectual disability. The research will also show if it is possible to predict from early genetic test results how severely a child with Rett syndrome will later be affected. It will also determine whether some ways of management improve the long-term outlook for the girl and her family. Finally this study will investigate why some families cope better with this devastating disorder than others. This research is only possible in Australia because of the ongoing register we have set up here.Read moreRead less
Large-scale Data To Understand Person-centred Outcomes In Cancer Survivors
Funder
National Health and Medical Research Council
Funding Amount
$1,163,471.00
Summary
Although the majority of people with cancer in Australia now survive long-term, little is known about long-term “person-centred outcomes” for cancer survivors - including mental health, disability, pain and quality of life. This project will use data from >70,000 cancer survivors and >190,000 people without cancer from the general population to generate new knowledge on person-centred outcomes, for different cancer types and over time, to inform and improve health and healthcare.
Outcomes After Serious Injury: What Is The Recovery Trajectory And How Do The Priorities For Treatment And Disability Services Change Over Time?
Funder
National Health and Medical Research Council
Funding Amount
$766,630.00
Summary
Traumatic injury is a significant contributor to global disease burden, with serious injury commonly resulting in disability and profound costs to the individual, family and society. This population-based project will describe the long term consequences of injury and recovery experiences of more than 2500 seriously injured patients. This longitudinal study will use quantitative and qualitative data to provide a comprehensive overview of patient outcomes and experiences in the first 5-years after ....Traumatic injury is a significant contributor to global disease burden, with serious injury commonly resulting in disability and profound costs to the individual, family and society. This population-based project will describe the long term consequences of injury and recovery experiences of more than 2500 seriously injured patients. This longitudinal study will use quantitative and qualitative data to provide a comprehensive overview of patient outcomes and experiences in the first 5-years after injury.Read moreRead less
The Association Between Disability Acquisition, Socio-economic Disadvantage And Health: A Longitudinal Analysis Of Trajectories Of Disability
Funder
National Health and Medical Research Council
Funding Amount
$92,539.00
Summary
People with disabilities are more likely to live in disadvantaged circumstances and experience poorer health and wellbeing than people without disabilities. The aim of my research is to contribute a nuanced, causally-robust longitudinal analysis of the relationships between disability, socio-economic disadvantage and health. I will model disability trajectories to characterise the diversity of disability experiences over time, and the determinants and consequences of different trajectories.
Quantifying The Burden, Understanding The Predictors, And Improving The Outcomes Of Non-fatal Injury
Funder
National Health and Medical Research Council
Funding Amount
$459,270.00
Summary
This Career Development Fellowship will use the analysis of existing (and continuing data collection), and key health data linkages to improve understanding of the outcomes of injury survivors and factors contributing to outcomes. The outcomes of this research program will be improved injury burden estimates, and better health outcomes for trauma survivors through informing evidence-based clinical guidelines and trauma care delivery.
Does binocular vision training enhance literacy among primary school children with poor reading? One in ten Australian children can not read well despite adequate intelligence and opportunity. This project aims to find out the extent that these reading problems reflect poor binocular vision (the eyes not working well together) and evaluate new treatments.