Transforming The Diagnosis And Management Of Severe Neurocognitive Disorders Through Genomics
Funder
National Health and Medical Research Council
Funding Amount
$2,499,330.00
Summary
Neurocognitive disorders (NCD) are one of the most common genetic conditions in our society and it results with a need for ongoing permanent care for many affected people. Until recently, only 30% of people with NCD could be diagnosed but this has changed with the availability of genomic testing where all genes can be tested at once. The use of genomics in the CRE will lead to new NCD genes being identified and this information being translated into a clinical setting.
A Longitudinal Study Of Psychopathology In People With Intellectual Disability
Funder
National Health and Medical Research Council
Funding Amount
$999,803.00
Summary
This project will further develop the research opportunities of an internationally unique 15 year follow up study of the mental health of young Australians with ID. We have shown that this group has 2-3 times the risk of suffering serious emotional and behavioural problems that are an added heavy burden on the individual, their family and carers and the community. These problems often are not recognised but are as common as schizophrenia in the community. The study will continue to use a combina ....This project will further develop the research opportunities of an internationally unique 15 year follow up study of the mental health of young Australians with ID. We have shown that this group has 2-3 times the risk of suffering serious emotional and behavioural problems that are an added heavy burden on the individual, their family and carers and the community. These problems often are not recognised but are as common as schizophrenia in the community. The study will continue to use a combination of questionnaire survey and in depth interviews of the young adults and their families or carers to track the course of their mental health. The study commenced in 1990 with nearly 1000 young people with ID aged 4-18 years and their progress has been reviewed every 2-3 years in over 75% of the original group. During the next 5 years we plan to follow their mental health during the critical stage of young adult life. During this time there is the greatest risk of mental illnesses such as depression and schizophrenia and the stresses of adjusting to new daily occupations, independent living or residential care and social contact away from the family. We will be able to study the specific emotional and behavioural problems faced by young adults with the main known causes of ID such as Down, Fragile X, Prader Willi and William Syndromes, as well as those who have autism. The great benefit of a long term follow up study is that it allows us to study the links between earlier family environmental, psychological and biological factors and subsequent mental health problems. We can also demonstrate the impact that mental illness in a young person with ID has on the family and parental mental health. The findings have implications for better diagnosis, improved care and management, early intervention and prevention of these common severe and under recognized mental health problems in this disadvantaged group of young Australians and their families and carers.Read moreRead less
Geographical Indications for Wine in Australia’s Free Trade Agreements. This project aims to clarify the appropriate basis for protecting geographical indications for wines in trade agreements and domestic legal systems. The project expects to generate new knowledge concerning the criteria, evidence and procedure that should be required to establish a geographical indication. Existing law risks misuse of this mechanism to unjustifiably protect domestic markets; the European Union is seeking prot ....Geographical Indications for Wine in Australia’s Free Trade Agreements. This project aims to clarify the appropriate basis for protecting geographical indications for wines in trade agreements and domestic legal systems. The project expects to generate new knowledge concerning the criteria, evidence and procedure that should be required to establish a geographical indication. Existing law risks misuse of this mechanism to unjustifiably protect domestic markets; the European Union is seeking protection for what appear to be grape varieties rather than geographical indications. Expected outcomes include evidence-based recommendations to government and industry. Project outcomes should benefit Australian economic interests by enhancing Australia’s ability to resist spurious geographical indication claims.Read moreRead less
NDIS: Rhetoric versus Reality? This project aims to explore the realities of living with intellectual disability in Australia, and the impact of individualised funding arising from the introduction of the NDIS. The study will examine, within this era of disability reform, how people with intellectual disability are having their needs met, and the extent to which they are involved in decision-making about their lives. The study will be conducted over three years using a mixed method design. It wi ....NDIS: Rhetoric versus Reality? This project aims to explore the realities of living with intellectual disability in Australia, and the impact of individualised funding arising from the introduction of the NDIS. The study will examine, within this era of disability reform, how people with intellectual disability are having their needs met, and the extent to which they are involved in decision-making about their lives. The study will be conducted over three years using a mixed method design. It will specifically examine the relationship between self-directed individualised funding and its effect on personal well-being, self-esteem and voice, choice and control. People with intellectual disability will act as co-researchers within the study.Read moreRead less
Legal and social dynamics of eBook lending in Australia’s public libraries. Legal and social dynamics of eBook lending in Australia’s public libraries. This project aims to develop an evidence base of quantitative and qualitative data about how eBooks are used in libraries. EBooks have tremendous beneficial potential, particularly for Australians in remote areas and those with impaired mobility or vision. However, libraries’ rights to acquire and lend them are more restricted than for physical b ....Legal and social dynamics of eBook lending in Australia’s public libraries. Legal and social dynamics of eBook lending in Australia’s public libraries. This project aims to develop an evidence base of quantitative and qualitative data about how eBooks are used in libraries. EBooks have tremendous beneficial potential, particularly for Australians in remote areas and those with impaired mobility or vision. However, libraries’ rights to acquire and lend them are more restricted than for physical books. Libraries and legal, social and data science researchers will investigate eBook lending practices and understand their social impacts. The project will identify ways of reforming policy, law, and practice to help libraries fulfil their public interest missions. This project is expected to enable libraries to extract more value from existing public investments.Read moreRead less
Using 3D printing to improve access to graphics by vision-impaired people. This project aims to investigate the possible benefits of 3D printing for production of accessible materials for vision-impaired people. Currently tactile graphics are used to provide severely vision-impaired adults and children with access to graphical content used in education and in orientation and mobility training. This project is expected to clarify the kinds of graphics for which 3D prints are better suited than ta ....Using 3D printing to improve access to graphics by vision-impaired people. This project aims to investigate the possible benefits of 3D printing for production of accessible materials for vision-impaired people. Currently tactile graphics are used to provide severely vision-impaired adults and children with access to graphical content used in education and in orientation and mobility training. This project is expected to clarify the kinds of graphics for which 3D prints are better suited than tactile graphics, and to build capacity within the national accessible format provision sector for the production and use of 3D prints. Benefits will include increased educational opportunities and quality of life for Australians with severe vision impairment, through improved access to graphic materials used in education and orientation and mobility training.
Read moreRead less
Confronting everyday harms: preventing abuse of people with disability. The findings of the Disability Royal Commission necessitate new approaches to prevent violence, abuse, neglect and exploitation. Framed by recognition theory, this project proposes empirical research with young people with cognitive disability, using a new concept of ‘everyday harms’ in their paid relationships. The results will inform early responses to poor quality interactions in disability support. The strategic alliance ....Confronting everyday harms: preventing abuse of people with disability. The findings of the Disability Royal Commission necessitate new approaches to prevent violence, abuse, neglect and exploitation. Framed by recognition theory, this project proposes empirical research with young people with cognitive disability, using a new concept of ‘everyday harms’ in their paid relationships. The results will inform early responses to poor quality interactions in disability support. The strategic alliances with the government, industry and community partners will develop a practice framework to prevent everyday harms and the escalation to abuse, and to promote safety and wellbeing. The research has policy benefits for capacity-building in the sector to act on the rights and voices of people with disability. Read moreRead less
Young people with cognitive disability: relationships and paid support. This project aims to improve the rights and wellbeing of young people with cognitive disability by exploring their relationship and interaction with paid support workers. The introduction of national individualised funding and support is a watershed in Australian disability policy. Understanding the role that paid support plays in the ongoing identity development of these young people is urgently needed to realise national p ....Young people with cognitive disability: relationships and paid support. This project aims to improve the rights and wellbeing of young people with cognitive disability by exploring their relationship and interaction with paid support workers. The introduction of national individualised funding and support is a watershed in Australian disability policy. Understanding the role that paid support plays in the ongoing identity development of these young people is urgently needed to realise national policy aspirations for people with disability of rights, choice, inclusion and independence. Using social geography and recognition theory, the project expects to deliver new understanding and improved practice around how paid support relationships can foster mutual care, respect and value at a critically important time in young people’s lives.Read moreRead less
Literacy Instruction for Children with Autism. There is a social and economic imperative to assist all individuals to reach their full potential with regard to literacy skills. The central goal of the proposed research is to develop and evaluate new ways to support comprehensive literacy instruction for children with autism spectrum disorder (ASD). Following our world-first pilot research, we will investigate the efficacy of the ABRACADABRA literacy instruction program delivered in small groups ....Literacy Instruction for Children with Autism. There is a social and economic imperative to assist all individuals to reach their full potential with regard to literacy skills. The central goal of the proposed research is to develop and evaluate new ways to support comprehensive literacy instruction for children with autism spectrum disorder (ASD). Following our world-first pilot research, we will investigate the efficacy of the ABRACADABRA literacy instruction program delivered in small groups of children with ASD supplemented by a novel parent-child shared book reading program. Immediate outcomes extend beyond advances in the science of reading to upskilling parents and professionals who support children with ASD, and provision of tangible life-long benefits for individuals with ASD.Read moreRead less
Producing, managing and owning knowledge in the 21st century university. The use, creation and dissemination of the products of research is a core function of Australian universities, and critical if research is to have impact in the real world. It is regulated by intellectual property laws, sector-wide grant conditions, licensing agreements with libraries and university policies on intellectual property ownership, authorship, open access and engagement. International law and practice creates an ....Producing, managing and owning knowledge in the 21st century university. The use, creation and dissemination of the products of research is a core function of Australian universities, and critical if research is to have impact in the real world. It is regulated by intellectual property laws, sector-wide grant conditions, licensing agreements with libraries and university policies on intellectual property ownership, authorship, open access and engagement. International law and practice creates another layer of regulation. Navigating this terrain is the responsibility of every academic and manager, but it is a complex, incoherent framework. Mapping it with an eye toward harmonization and coherence will better advance public goals, in particular improve access to research for impact and engagement.Read moreRead less