Register4: an Australian web-enabled resource created by the National Breast Cancer Foundation to facilitate and accelerate cancer research
Authors: John L Hopper, Carmel Apicella and Alison J Butt
Published online: 19 May 2014
To the Editor: Register4 is an online register of Australian men and women that aims to reduce the costs and time involved in recruitment for cancer research studies by matching researchers with willing participants, harnessing the speed and reach of the internet. An initiative of the National Breast Cancer Foundation, Register4 was launched in 2010 and is modelled on the US Army of Women (http://www.armyofwomen.org) and the Australian Twin Registry.1 To date, there are nearly 40 000 members (> 96% women) with a broad demographic representation: aged from 18 to over 70 years (most 30–59 years); residing in all states and territories (most in New South Wales, Victoria and Queensland); and 80% born in Australia. The membership is highly motivated to participate in research: over 20% of members are willing to provide DNA samples or participate in a clinical trial, and nearly 15% are willing to provide a sample of breast tissue.
Data on lifestyle and family health history (including reproductive history, history of breast or other cancers, and chronic illness) have been collected for more than 20% of members through the online EPI-Q Health and Lifestyle Questionnaire. Of the more than 7300 members who completed the EPI-Q, 20% have a prior history of breast cancer, and 75% have no history of any cancer. Other chronic health conditions covered by the questionnaire include asthma (20% of members), high blood pressure (16%), and osteoarthritis and osteoporosis (12%). Over 60% of participants have never smoked.
To contact Register4 members or access their data, cancer researchers join Register4 as a researcher member, then submit proposals to the Register4 Access Committee for approval. All projects must be fully funded and approved by a human research ethics committee (HREC). The operation of Register4 has HREC approval.
To date, Register4 has been used to recruit participants for 18 cancer research projects, involving nearly 13 000 members. Ample and appropriate participants were recruited within days — dramatically faster than conventional recruitment, which typically takes years.
More information about Register4 can be found at the website (https://www.register4.org.au) or obtained via email (info@register4.org.au) or by telephone (1300 709 485).
Competing interests
No relevant disclosures.
Acknowledgements
References
- Hopper JL, Foley DL, White PA, Pollaers V. Australian Twin Registry: 30 years of progress. Twin Res Hum Genet 2013; 16: 34-42. lefthere
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