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
The transition from secondary school to adulthood: Experiences and life outcomes for youth with an intellectual disability and their families. This project seeks to explore the challenges faced and outcomes achieved by students with an intellectual disability as they move from secondary school into adult life. The study will investigate the factors at an individual, educational, family, and societal level which positively and adversely affect outcomes for young people with an intellectual disab ....The transition from secondary school to adulthood: Experiences and life outcomes for youth with an intellectual disability and their families. This project seeks to explore the challenges faced and outcomes achieved by students with an intellectual disability as they move from secondary school into adult life. The study will investigate the factors at an individual, educational, family, and societal level which positively and adversely affect outcomes for young people with an intellectual disability and their families. Family impacts can include significant loss of income as parents may have to cease employment to care for their young adult who has limited employment or day placement options. Gaining the knowledge to minimise the disruption to family life, which often occurs at this time of transition, will lead to strengthening Australia's social and economic fabric.Read moreRead less
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.
Discovery Early Career Researcher Award - Grant ID: DE230101210
Funder
Australian Research Council
Funding Amount
$431,476.00
Summary
Social Inequalities in Oral Health among Australian Working Age Adults. Australian working age adults with social and economic disadvantage have significantly poorer oral health outcomes than those from advantaged backgrounds. This project explores how changes in social position over time, and interactions between different forms of social disadvantage, contribute to social inequalities in oral health. This project expects to improve understanding of social inequalities in oral health, and its s ....Social Inequalities in Oral Health among Australian Working Age Adults. Australian working age adults with social and economic disadvantage have significantly poorer oral health outcomes than those from advantaged backgrounds. This project explores how changes in social position over time, and interactions between different forms of social disadvantage, contribute to social inequalities in oral health. This project expects to improve understanding of social inequalities in oral health, and its solutions, by developing and applying analytical and simulation models. This will help identify ways to reduce the persistent social inequalities in oral health outcomes in working age adults. In doing this, it will inform policies in future that will significantly improve the well-being of Australian working age adults.Read moreRead less
Changing children’s chances: Exploring pathways to developmental inequities. This project aims to investigate the causes of health and developmental inequities between Australian children. Inequities are increasingly observed in Australian children’s physical health, social and emotional wellbeing, and academic learning. Such inequities are unjust, unnecessary and potentially preventable. This project aims to understand the pathways leading to these inequities by examining the many contexts in w ....Changing children’s chances: Exploring pathways to developmental inequities. This project aims to investigate the causes of health and developmental inequities between Australian children. Inequities are increasingly observed in Australian children’s physical health, social and emotional wellbeing, and academic learning. Such inequities are unjust, unnecessary and potentially preventable. This project aims to understand the pathways leading to these inequities by examining the many contexts in which children and their families live and grow. Through a series of innovative analyses using existing data, the project aims to identify potentially modifiable factors at the child, family, school, and community level that contribute to developmental inequities. Understanding of the most promising leverage points for interventions to reduce inequities for Australian children could be used to inform policy.Read moreRead less
Discovery Early Career Researcher Award - Grant ID: DE200101618
Funder
Australian Research Council
Funding Amount
$397,241.00
Summary
Reproducibility and transparency in the synthesis of research findings. This project aims to evaluate the reproducibility and transparency of systematic reviews and meta-analyses of the effects of health, social, behavioural and educational interventions. The project expects to determine how reliable, trustworthy, and reusable syntheses of research findings are, and provide critical insight into the education and technical infrastructure needed to improve them. Expected outcomes of the project i ....Reproducibility and transparency in the synthesis of research findings. This project aims to evaluate the reproducibility and transparency of systematic reviews and meta-analyses of the effects of health, social, behavioural and educational interventions. The project expects to determine how reliable, trustworthy, and reusable syntheses of research findings are, and provide critical insight into the education and technical infrastructure needed to improve them. Expected outcomes of the project include new methods to enhance open and reproducible research practices in research synthesis, regardless of discipline. This should provide significant benefits beyond the DECRA, such as more credible evidence to inform government policies and professional society guideline recommendations.Read moreRead less
Work-related fatal and non-fatal accidents and injuries and exposure to workplace hazards in migrant workers in Australia. Do migrants have worse workplace conditions and more work-related accidents and injuries than Australian-born workers? This project will analyse national deaths and hospital discharge data, and determine best practice methods to include migrant workers in a future cross-sectional study looking at occupational health and safety.
Child health and developmental inequities: Evidence for precision policy. The project aims to use cutting edge analytic approaches applied to existing data to identify how policy interventions related to parents’ mental health, preschool programs, and the built environment can be optimised to reduce inequities in children’s mental, academic, and physical health outcomes. The project will be informed by our partners and advisers from across government portfolios and service delivery, ensuring tha ....Child health and developmental inequities: Evidence for precision policy. The project aims to use cutting edge analytic approaches applied to existing data to identify how policy interventions related to parents’ mental health, preschool programs, and the built environment can be optimised to reduce inequities in children’s mental, academic, and physical health outcomes. The project will be informed by our partners and advisers from across government portfolios and service delivery, ensuring that the evidence generated has contemporary policy relevance. The project expects to identify clear and actionable policy pathways to reduce child inequities in Australia, which can benefit decision makers by helping them to direct limited public funds towards intervention opportunities that will have the greatest impact.Read moreRead less
Development of an 'ageing household' model for assessing medium to long-term vaccine impact in populations. As birth rates in developed and newly industrialising countries fall, so too do the number of households containing children, with implications for the spread of infections in families. We aim to study the influence of this phenomenon on the risk of common childhood infections, and the length of time that vaccines given in infancy will protect.
Mental health, job quality and workforce participation: evidence from population health research to address complex problems and conflicting policies. Mental disorders such as depression are a major cause of disability. Improving mental health can increase productivity and workforce participation. However, the psychosocial quality of work is a factor that overlays the relationship between work and health. Poor quality work (for example, unreasonable time pressure, insecurity) increases the risk ....Mental health, job quality and workforce participation: evidence from population health research to address complex problems and conflicting policies. Mental disorders such as depression are a major cause of disability. Improving mental health can increase productivity and workforce participation. However, the psychosocial quality of work is a factor that overlays the relationship between work and health. Poor quality work (for example, unreasonable time pressure, insecurity) increases the risk of poor mental health, absenteeism, and exit from the workforce. This project will analyse data following people over time to investigate the long-term health and employment consequences of poor psychosocial job quality, and consider the special case of mature age workers. It will identify those individuals at greatest risk, and factors that can buffer against the adverse effects of poor quality work.Read moreRead less