2005 saw the first full year of operation of the NHMRC-funded Indigenous Capacity Building Grant (ICBG). We have established a board of management, held two team workshops to assist in the planning and identification of study proposals and supervisors & mentors, professional development writing workshops, and had other opportunities for networking and to act as advocates for Indigenous health. Also of note was the successful identification and recruitment, in late 2005, of a suitable coordinator for the ICBG to aid in maximising the benefits of the grant for all involved.

 

The ARC Linkage Project is a large and significant research study, with immense national importance. It will be the first time that a state-wide, whole of population study involving a number of industry partners and comprising of a number of WA Government Departments including Justice, Community Development, Education and Training, Health and the Disability Services Commission and the University of Western Australia, has been undertaken in Australia. The results of the research will generate valuable information for developing early, holistic intervention strategies to enhance the well-being and life chances of children and young people. The data will also enable a well-integrated strategy for research endeavours that can inform policy, practice, and fiscal decision-making in a rational and evidence-based way.The Intellectual Property Agreement to enable the linkage of data between the different jurisdictions has been agreed and signed by the State of WA and the University of Western Australia. This was signed off in March 2005. Four PhD candidates were selected and commenced their candidature variously in July and August 2005. These four students are recipients of the APAI Scholarship. Two PhD students (self funded) are also doing their PhDs on the ARC Linkage project. The candidates have developed their research proposals and submitted ethics approvals. They will commence their research once their data have been linked and they have complied with all requirements for release of data. Health and Education data linkage commenced in December 2005.

 

April 2005
Western Australian Aboriginal Child Health Survey (WAACHS)
The WAACHS has been one of the largest and most comprehensive investigations into the health and well-being of over 5000 WA Aboriginal children in their families and communities. The survey was designed to build a store of knowledge from which preventive strategies can be developed to promote and maintain the healthy development and the social, emotional, academic, and vocational well-being of Aboriginal children. In April 2005 the second volume of results on the social and emotional wellbeing of Aboriginal children and young people was launched. Findings from the second volume of results have been communicated and disseminated throughout the state with members of the WAACHS project visiting almost all of the regions in WA, including the Kimberley, Pilbara, Mid West, Goldfields, South West and Perth metro. Presentations were also delivered to the national Mental Health Services Conference for Australia and New Zealand in Adelaide, the National Adolescent Mental Health Conference in Melbourne and the Charles Darwin Symposium on Indigenous Health in Alice Springs. In addition to these scientific meetings there have been numerous State and federal policy meetings in which the findings have been presented and discussed to encourage uptake and application.

 

September 2005
Perth researchers receive national suicide prevention awards
Suicide prevention researcher Kate Miller has been recognised for her innovative work in developing safe, effective online resources for young people. Kate, 24yrs of age, is a project officer with the Ministerial Council for Suicide Prevention at the Telethon Institute for Child Health Research. Kate has developed a unique Internet resource targeted at young people who access suicide prevention information or support through the Internet. Kate also is responsible for the website for the Ministerial Council for Suicide Prevention and developed the ASPiRE (Australian Suicide Prevention Information Resource Exchange) website, supported by Woodside Energy. Professor Sven Silburn, who Chairs for the Ministerial Council for Suicide Prevention at the Institute, also received an Outstanding Contribution Award to acknowledge his major role in suicide prevention research in Australia. The LiFe Awards are presented annually by Suicide Prevention Australia, a non-Government not-for-profit organisation committed to supporting the important initiatives undertaken by all those working in suicide prevention.

 

October 2005
WA team uses baby tooth to solve mystery death
In October 2005, a team of Perth scientists used a keepsake baby tooth to help a Queensland couple solve the mystery of their 7-year-old daughter’s death,14 years after she died. Staff from the Western Australian Institute for Medical Research (WAIMR), the Telethon Institute for Child Health Research (TICHR) and the Neurogenetics and Forensic laboratories within PathWest, combined to establish that the little girl had died from the devastating neurological disorder, Rett Syndrome. Despite intensive investigation, the little girl’s condition went undiagnosed by doctors all through her life, so the fact that the cause of her illness and death was finally pinpointed, gave the family the information they needed to understand what had happened. The group was able to make the diagnosis after carrying out a gene test on DNA extracted from the baby tooth. A paper outlining the effort has just been published in the international medical journal, The Lancet. The Australian Rett Syndrome Study is a nation-wide study of Rett syndrome that is directed from the Telethon Institute for Child Health Research. It involves a collaboration of centres across Australia with the common goal of being able to provide accurate information about the progression of the disorder and about how it can best be managed. The study is also researching the relationship between the clinical and genetic characteristics of Rett syndrome and is an international leader in this area.

 

November 2005
National snapshot of children's development
The Australian Early Development Index (AEDI), an initiative of the Centre for Community Child Health (CCCH) (a key research centre of the Murdoch Childrens Research Institute) in partnership with the Telethon Institute for Child Health Research (TICHR), surveyed over 16,700 children in 25 communities across Australia. The AEDI is a powerful tool for creating communities where all children can thrive and grow to fulfil their potential. It assists communities to understand how their children are doing in crucial areas of development such as physical health, language and communication, emotions, behaviour and social competence. Communities can use their results to put effort and resources into services and programs for young children so that all children make the best possible start as they enter primary school. Findings of the AEDI were announced in Broadmeadows, Melbourne in November 2005, by the Minister for Family and Community Services, Senator Kay Patterson. EDI, an initiative of the Telethon Institute and the Centre for Community Child Health in Melbourne, is funded by the Australian Government Department of Family and Community Services with corporate support from Shell in Australia.

 

Intellectual Disability Exploring Answers
The IDEA (Intellectual Disability Exploring Answers) database held a symposium on Intellectual Disability and Autism in November, 2005 at the Telethon Institute for Child Health Research to present clinical and research advances around intellectual disability. Presentation topics included the clinical investigation of a child with Global Developmental Delay, the impact of childhood disability on siblings and genetics and autism. The database currently uses the Heber system to classify the causes of intellectual disability, which in almost half of the cases is unknown. Other international systems of classification were discussed.

 

Consumer and Community Participation
The Institute’s commitment to Consumer and Community Participation made exciting progress in 2005. Some of the highlights which took place over then year include:
The development and implementation of an Institute wide policy on consumer and community participation at the Institute and the subsequent establishment of a Joint Institute / SPH Steering Committee’s which collaborates with groups such as the Health Consumers Council (WA); Cochrane Consumer Network; the Cancer Foundation (WA); the Down Syndrome Assoc.; Diabetes WA; Arthritis Foundation (WA); and Aboriginal Health, to work through the many tasks associated with implementing a consumer and community participation strategy at the Institute. The Raine Study Consumer and Community Participation Forum held in September with participants and their families. This forum gave very valuable feedback and insights into the families’ perceptions of being involved in the Raine Study. The feedback, in particular the information from the participants themselves, will lead to the establishment of a Raine Study Youth Group in 2006. It is envisioned this group will have an opportunity to be involved at a management level in planning for future activities of the Raine Study. The Rett Syndrome Study established a parent reference group, which has membership from all over Australia and holds meetings via a teleconference. The group has so far given feedback on the information they would like to see in their newsletter and the planning for a national conference which was held in Sydney in November.