The Ovarian Cancer Prognosis And Lifestyle (OPAL) Study: Long-term Outcomes
Funder
National Health and Medical Research Council
Funding Amount
$871,657.00
Summary
Ovarian cancer affects 1500 women each year in Australia and 5-year survival is <45%. Affected women thus face a poor prognosis and often ask what they can do to improve this. There is no direct evidence whether a woman’s lifestyle might influence her outcomes, although data from breast cancer suggest this is possible. The OPAL Study is following 960 women with ovarian cancer to identify whether lifestyle is associated with long-term survival to provide evidence for women with this disease.
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
Improving Outcomes From Ovarian Cancer: Building The Evidence To Help Women Help Themselves
Funder
National Health and Medical Research Council
Funding Amount
$1,839,772.00
Summary
Ovarian cancer affects 1300 women each year in Australia and 5-year survival is <45%. Women with this cancer thus face a poor prognosis and many ask what they can do to improve this. There is no direct evidence whether a woman’s lifestyle might influence her outcomes, although data from breast cancer suggest this is possible. The OPAL Study will follow 1200 women with ovarian cancer to identify whether lifestyle is associated with survival to provide guidance for women with this disease.
Ovarian and endometrial cancer affect >3,200 women each year in Australia and 3 or 4 women die from these cancers every day. The overall aim of my program of research is to reduce the burden of these cancers in future generations of Australian women by increasing our understanding of (i) what causes them, (ii) how we can optimise patient management to enhance patient outcomes and (ii) how lifestyle changes might improve quality and life and survival, for women who are diagnosed with them.
Patterns Of Care And Quality Of Life In Patients With Pancreatic Cancer.
Funder
National Health and Medical Research Council
Funding Amount
$680,010.00
Summary
Available evidence suggests that care of patients with pancreatic cancer is variable and dependent on a variety of factors such as geographic location, socioeconomic status and hospital volume. Variability in care may influence survival and quality of life of patients. We propose to conduct a comprehensive study of the management of patients with pancreatic cancer in NSW and, in a substudy in QLD, to determine how variation in management affects patient quality of life.