Frequently Asked Questions - General Information
- Why is this study being done?
- What is the JFHS about?
- Who is running the study?
- Why run a family health study in WA?
- Why Joondalup?
- Why make this a family health study?
- Have similar studies been done before?
- What sorts of things were discovered?
- What would I have to do if I joined the study?
- Why do you want to take a blood sample?
- How would I benefit from taking part?
- When will the study start?
- How can I join?
1. Why is this study being done?
One of the major challenges facing most developed nations is common, chronic and complex disease such as asthma, cancer, heart disease, diabetes, osteoporosis and schizophrenia. In Australia, 1 in 4 teenagers is obese.
These health problems affect all age groups, but particularly the very young and the very old. Not only do more people have these diseases, they are becoming increasingly challenging and expensive to prevent, diagnose and treat.
As a society, we need to find out what exactly cause these diseases. Many genes, lifestyle and environmental factors act independently and together to influence who gets the disease and also the way in which it develops and responds to different treatments.
Currently, the best way to determine exactly which genes and risk factors contribute and interact to cause disease is to conduct large-scale population studies.
The JFHS will investigate a wide range of health and lifestyle data, enabling scientists to compare the results within families and the larger community and see how these results change over time. We are also interested in how social and environmental issues affect health.
2. What is the JFHS about?
The Joondalup Family Health Study will be a long-term health study of families and other members of the City of Joondalup community. Essentially, the study will be a contemporary, metropolitan version of the Busselton Health Study, but with a focus on families, ie. the health of both adults and children.
3. Who is running the study?
The JFHS will be conducted by some of Western Australia's leading health professionals and medical researchers. Professor Lyle Palmer, from the Laboratory for Genetic Epidemiology at the WA Institute for Medical Research, will lead the study team. Other strategic partners include The University of Western Australia, The Women and Infants Research Foundation, Edith Cowan University and the Lions Eye Institute.
The study has been endorsed by the City of Joondalup Council, Dr Mal Washer MP (Federal Member for Moore), the WA branch of the Australian Medical Association, Mr Tony O'Gorman MLA (State Member for Joondalup) and the WA Health Department.
4. Why run a family health study in WA?
Western Australia is an ideal location for a metropolitan family health study.
Firstly, WA is at the forefront of international medical research. This state has a long and outstanding history of population-based health research, as evidenced by some of the world's best linked medical databases, internationally-acclaimed clinical and epidemiological expertise and the model provided by the Busselton Health Study.
Secondly, our state is privileged to high quality medical care and has a small number of tertiary referral centres for most diseases.
Finally, we have a geographically-isolated and stable population, with a range of ethnic and social backgrounds.
This combination of people, data and expertise means WA is the most cost-effective place in the world for running a large family health study.
5. Why Joondalup?
The study team spent 18 months researching the best Perth metropolitan area for running a family health study. Joondalup was chosen for the following reasons:
- Strong sense of community
- Well-established health and education facilities
- High proportion of young families
- Regarded as visionary
Research from ECU Joondalup also indicates that the people of Joondalup generally represent the WA community in regard to key health findings.
6. Why make this a family health study?
The JFHS will have a strong focus on the health of adults, children and families.
Many diseases, eg asthma, run in families. The study aims to paint a picture of which genes, environmental and lifestyle factors are important in influencing who will get asthma and other diseases, why they get it and how we can best treat it.
We hope to provide an opportunity for individuals to improve their own health, the health of their children, grandchildren and future generations.
7. Have similar studies been done before?
There have been several long-term population studies world-wide that have helped provide information about cancer, asthma, heart disease and diabetes. Here are a few examples:
In related news, researchers are planning to combine data from the Framington and Busselton studies to find the key to preventing heart disease, one of the leading causes of death in Australia. The JFHS would however, be the first to focus on the total family health of an Australian community.
8. What sorts of things were discovered?
Here are just a few examples of health outcomes or new knowledge that benefited the community, as a result of long-term follow-up studies:
- Busselton Health Study - Development of easier, cheaper and more widely available diagnostic test for haemochromatosis (iron overload)
- The Raine Study - Showed that repeated ultrasounds do not benefit pregnant women or their babies
- Children of the 90's (ALSPAC) Study - Research suggests that premature babies are more prone to emotional and behavioural problems like ADHD in later childhood
9. What would I have to do if I joined the study?
Participation in the JFHS would be entirely voluntary. Volunteers will be asked to undergo a comprehensive health check approximately every 3 years.
Participants will be asked to complete a questionnaire about their health, lifestyle and diet. They will also be asked to attend an appointment at ECU to undergo some tests, such as heart, lung, vision and hearing tests. We will also ask all study participants for consent for a blood sample.
10. Why do you want to take a blood sample?
Blood samples can provide very useful information such as biochemical markers (eg cholesterol levels), biomarkers (eg PSA for prostate cancer), and DNA. Blood samples would only be taken with informed consent of the participant.
11. How would I benefit from taking part?
As this is a research study conducted by health researchers, participation in the study does not replace a medical check up by your doctor. However participation may help to detect, or assess your risk of developing, health problems such as high blood pressure, high cholesterol, eye disease, mental health problems and hearing problems.
There is evidence that health study participants show potential improvement in their own health as a result of receiving regular health-testing.
However the most important benefits will be at the community level. Diseases like cancer and heart disease currently have no cure. The JFHS would potentially provide at least some of the answers and contribute to new and improved treatments for our children and children's children. The main benefits of this study will be for future generations, in terms of disease prevention, improved treatments, new technologies and an understanding of what makes people and communities healthy and well.
This data would also guide policy and decision making for health economics and effective resource allocation.
12. When will the study start?
It is hoped that the JFHS will commence in late 2007. We are continuing to engage the community through an extensive and ongoing consultation program. So far, the Joondalup community has shown a very high level of support [0.5MB, PDF] for the study. The study team is now collaborating with key stakeholders to seek the necessary funding and plan the structure of the study in detail.
13. How can I join?
We are not yet recruiting study participants. If you would like to keep informed about the project planning or participate in community engagement events, please contact us or register for our JFHS newsletter.
Please note that study participation is not restricted to families, although this will be the main focus of the JFHS. We welcome contributions from all members of the community.
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Western Australian Institute for Medical Research Inc.
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