Background: The Joondalup Family Health Study (JFHS)

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A team of medical researchers from the Western Australian Institute for Medical Research, The University of Western Australia, Edith Cowan University Joondalup Campus, Lions Eye Institute, Lions Ear and Hearing Institute, Princess Margaret Hospital, the Women & Infants Research Foundation, the Joondalup Health Campus, and other academic, government and hospital partners have been planning a new Family Health Study (http://www.jfhs.org.au/).

Active outreach programs to the academic community of WA, the medical community, the business community, and to broader society regarding a potential new large cohort study in WA have now been underway for over 3 years, together with a parallel program considering the ethical, legal, and social issues related to human genetic research.

The Joondalup Family Health Study will be the most extensively characterized, community-based cohort study ever undertaken and will dramatically enhance WA research capacities and competitiveness across many different disciplines. The Joondalup Family Health Study would build on the experience of a number of previous large cohort studies, including the Busselton Health Study, the Health-in-Men Study, and the Raine Cohort Study. The planned study will have a strong focus on families and the health of both children and adults, and will seek to collect extensive data from up to 80,000 volunteers every 3 years.

The Study aims to investigate the complex interplay of environmental, lifestyle and genetic components that affect the risk of common conditions such as asthma, heart disease and diabetes in both adults and children. Detailed data regarding lifestyle and diet, together with measures relevant to lung function, cardiovascular function, immune function, eye disease, hearing loss, mental health, and many other measures will be collected from volunteer participants. Individuals who volunteer to participate in the Study would also be asked for consent for a blood sample to be taken. The blood samples will be stored so that they can be used for biochemical and genetic analysis in the future.

Joondalup was chosen as the site for a Family Health Study after detailed research. Not only has Joondalup been regarded as visionary since its inception in the 1970s, its strong focus on community development and access to well-established education and health facilities make the City an ideal location.

In close consultation with key stakeholders in Joondalup, one of the most extensive programs of community outreach ever conducted for any medical research study in the world was conducted by our team in the last quarter of 2005. The results of extensive outreach, including a detailed postal survey of 7,500 residents and a Community Forum, strongly supported moving ahead with the Study. The picture that has emerged is of overwhelming community support for a Joondalup Family Health Study - 96% of those surveyed believed that it was very or quite important to conduct a large-scale Family Health Study; 85% were very or quite interested in participating in a Joondalup Family Health Study; and 85% were very or quite likely to allow their children to participate (see http://www.jfhs.org.au/ for detailed results).

Joondalup community leaders have endorsed the Family Health Study, including the City of Joondalup Council, Moore Federal MP Dr Mal Washer, and Joondalup MLA Mr Tony O’Gorman. WA health groups have also endorsed the Study, including the Health Department of WA, the Australian Medical Association (WA Branch), Diabetes Australia, the Busselton Population Medical Research Foundation, the Cancer Council of WA, the Blind Association of WA, the Lion’s Eye Institute, Ear Science Institute Australia, and Sleep Disorders Australia (WA Branch).

Our program of extensive community engagement and outreach in the City of Joondalup will continue during 2007, and will be an integral and ongoing component of the Joondalup Family Health Study. This program has already shown strong support for the planned Joondalup Family Health Study from the community and the medical profession, and we are now moving ahead with establishing the governance structure and seeking funding for the Study.

For more information: http://www.jfhs.org.au/
9346 7216 or 1800 783 110