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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
Allostatic Mediators Of Socioeconomic Inequalities In Periodontitis Among Australian Adults
Funder
National Health and Medical Research Council
Funding Amount
$368,000.00
Summary
Periodontal (gum) disease is a significant cause of tooth loss among adults in Australia. Bacteria (germs) that stick to teeth in dental plaque are the primary cause of gum disease. However, the amount of damage caused to the gums depends heavily on the body's immune system which fights infection throughout the body. Like many other health conditions, gum disease occurs at a higher rate in people in a relatively low socioeconomic-position (SEP) compared to people from high SEP. Studies of other ....Periodontal (gum) disease is a significant cause of tooth loss among adults in Australia. Bacteria (germs) that stick to teeth in dental plaque are the primary cause of gum disease. However, the amount of damage caused to the gums depends heavily on the body's immune system which fights infection throughout the body. Like many other health conditions, gum disease occurs at a higher rate in people in a relatively low socioeconomic-position (SEP) compared to people from high SEP. Studies of other health conditions have shown that psychosocial stress (eg. job strain, financial stress) disproportionately affects people in low SEP groups. Stress, in turn, is known to alter the body's defense mechanisms, including the immune system, contributing to higher rates of conditions such as heart disease. Researchers have used the term allostatic load to describe this failure of the body's defense system under stress. Stress has also been suggested as a contributing factor in gum disease. This study will investigate whether this sequence of events producing allostatic load also plays a role in gum disease. We will study a random sample of 610 Australian adults from the full range of SEP backgrounds. We will ask them about their experience of daily stress, and measure their levels of gum disease and dental plaque. We will also collect samples of fluid from around their gums to measure quantities of two chemicals that indicate the activity of immune defense mechanisms in the gums. We will analyze these results to determine whether stress affects the body's responses to dental plaque, and whether that response accounts for differences in levels of gum disease between SEP groups. Results from this study will pinpoint the role of common bodily defense mechanisms in the development of gum disease. These results may help to identify sources of stress that, if controlled, could reduce rates of gum disease and other conditions affected by allostatic load.Read moreRead less
Founders and survivors: Australian lifecourses in historical context. This project will create one of the world's outstanding longitudinal studies of human health and resilience. It will contribute to the historical understanding of European migration, settler colonialism, forced labour and human health under stress, long-run family formation and falling fertility, household economy, and the social determinants of health. It will contribute to debate both nationally and internationally on the lo ....Founders and survivors: Australian lifecourses in historical context. This project will create one of the world's outstanding longitudinal studies of human health and resilience. It will contribute to the historical understanding of European migration, settler colonialism, forced labour and human health under stress, long-run family formation and falling fertility, household economy, and the social determinants of health. It will contribute to debate both nationally and internationally on the long-run effects of social and biomedical interventions and of investment in human capital. It will tell the grassroots history of the Australian penal and colonial experiments and it will form a scholarly coalition with the great community of family historians. Read moreRead less
COst-effectiveness analyses of improved adherence to Management PLans among AustralIANS (COMPLIANS). Chronic diseases are the leading cause of disability in the community and over $34billion is spent each year on health services in Australia treating these diseases. It is hoped that the project will lead to identification of opportunities for cost-effective prevention and treatment of lung and other chronic diseases and that this will lead to more cost-effective deployment of healthcare resourc ....COst-effectiveness analyses of improved adherence to Management PLans among AustralIANS (COMPLIANS). Chronic diseases are the leading cause of disability in the community and over $34billion is spent each year on health services in Australia treating these diseases. It is hoped that the project will lead to identification of opportunities for cost-effective prevention and treatment of lung and other chronic diseases and that this will lead to more cost-effective deployment of healthcare resources. Improvements in the management and treatment of these diseases will result in an improvement in the quality of life of Australian patients, and their active and productive participation in society for as long as possible.Read moreRead less
Predicting The Individual Risk Of Prostate Cancer In Australian Men
Funder
National Health and Medical Research Council
Funding Amount
$348,656.00
Summary
Prostate cancer is a major cause of disability and death in Australian men. A number of factors, particularly age and family history, influence the risk of prostate cancer but, in contrast to breast cancer, we don't know what is the risk of developing prostate cancer over a period of time for a man with a specific set of risk factors. In fact, while a number of statistical models have been developed that use a woman's risk factor profile to estimate her risk of breast cancer, none is currently a ....Prostate cancer is a major cause of disability and death in Australian men. A number of factors, particularly age and family history, influence the risk of prostate cancer but, in contrast to breast cancer, we don't know what is the risk of developing prostate cancer over a period of time for a man with a specific set of risk factors. In fact, while a number of statistical models have been developed that use a woman's risk factor profile to estimate her risk of breast cancer, none is currently available for prostate cancer. We will apply standard statistical methods to existing data from the Australian Risk Factors for Prostate Cancer study and from the Australian Institute of Health and Welfare to develop a prostate cancer risk prediction model. We will test how factor like age, detailed family history, diet, baldness status and possibly previous PSA tests and prostate biopsies predict the risk. After developing the model, we will test the accuracy of the predictions in three ways. First, using existing data from the Australian Prostate Cancer Family Study, we will see whether the number of cases in a group of men is close to the number predicted by the model (calibration). Second, to test whether the model discriminate well men who develop prostate cancer from those who do not, we will collect family trees in a sample from the Melbourne Collaborative Cohort Study. We will use these data also to estimate the optimal cut point: men above this level of risk will be considered at high risk. Third, we will apply the model to existing data from the Dutch Prostate Cancer Family Study (DPCFS) to test whether the optimal cut point identify high-risk men and to validate the model in a non-Australian population. Finally, we will prepare a computer package that health professionals will use as decision-making tool in different scenarios including individual cancer risk assessment, design of prevention trials and targeting prevention programs to high-risk men.Read moreRead less
Do Breast Cancer Risk Factors Differ According To Underlying Genetic Susceptibility? A Pooled Analysis Of Prospective Studies From The NCI Cancer Cohort Consortium
Funder
National Health and Medical Research Council
Funding Amount
$418,581.00
Summary
We propose to use data from 23 international prospective cohort studies in the Cancer Cohort Consortium organised by the US National Cancer Institute to evaluate gene environment interactions for women who are at increased genetic risk of breast cancer. Our ultimate goal is to enhance the performance of clinical prediction tools and to develop targeted evidence-based strategies to mitigate the high absolute risk of breast cancer for women at increased genetic risk of the disease.
Post-implementation economic evaluation of childhood vaccination programs. This project will develop a novel framework for assessing the value for money achieved by childhood vaccination programs. This will provide decision makers with methodologically sound economic assessments that incorporate real world program outcomes.