Pathfinder Information for Members
Prostate cancer remains the most common cancer affecting Australian men, with 1 in 7 Australian males likely to be diagnosed before the age of 75 years. Survival rates (5-year relative survival) for prostate cancer in Australia have increased considerably, from 58% in the period 1982-87 to 92% in 2006-2010 (Australian Institute of Health and Welfare, 2012). This increase is thought to be the result of the lead-time and inclusion of non-fatal cancers associated with PSA testing (Dickman & Adami, 2006) in addition to early intervention and improvements in the treatment of the disease (Baade, Coory, & Aitken, 2004; Kvale et al., 2007). Estimates suggest that by 2017 there will be more than 267,000 men living with prostate cancer in Australia, more than double the number at the end of 2007, and that about 80% of these men will be long term survivors or men having continued monitoring (Yu, Luo, Smith, Clements, & O’Connell, 2012; Yu et al., 2011).
However, while many more men are surviving prostate cancer than ever before the burden of the disease is being felt by an increasing number of men, their partners and families and signifies there is a pressing need to understand more about the challenges faced by those affected and how they are impacted.
What is Pathfinder?
To help find out more about the experiences of those people who have been affected by prostate cancer, you are invited to register to become a member of Pathfinder.
Pathfinder is a national online database of men, their partners, caregivers and family members who are interested in becoming involved in research related to prostate cancer.
Researchers in the field are offered the opportunity to recruit participants for their projects through Pathfinder. To be granted access, the researchers must have prior ethical approval from an external committee and will be subject to an application process with the scientific advisory committee that manages Pathfinder.
The benefit of an online database of those who are interested in taking part in research studies is that it allows researchers to spend less time and resources on recruiting participants for their studies which can be a substantially time-consuming process, affecting the efficiency of dissemination of research results.
What do I have to do to become a Pathfinder member?
When you sign up to become a member of Pathfinder, you will be asked to provide some personal information. Registration takes about 5 minutes and is free. You don’t need to have had cancer to participate.
Once a project has been approved, you will receive an email to ask if you’d like to find out more about the research project. If you are interested in the project and you fit the researcher’s eligibility criteria, simply contact the research team using the information provided.
Are there any risks to becoming a member of the register?
Besides your time, there should be no other drawbacks from registering your interest to be approached about future prostate cancer-related projects. Your membership on this register is entirely voluntary and you request for your information to be removed at any time, should you so wish, without giving reasons.
How will your information remain confidential?
We would like to reassure you that all information collected, is confidential and will only be used to contact you about research projects and your interest in potentially being a consumer representative on research projects only. No information that you provide and that identifies you will be passed on to any other person who is not directly involved in the register.
The ability to form Pathfinder has been reviewed and approved by the Griffith University Human Research Ethics Committee. Should you wish to discuss the study with someone not directly involved in the project about the ethical conduct of the study or your rights as a participant, or should you wish to make an independent complaint, you can contact the Manager, Griffith University Research Ethics Committee on 07 3735 4375 or firstname.lastname@example.org
If you wish to register, please click on the link to the registration form.
Australian Institute of Health and Welfare. (2012). Cancer survival and prevalence in Australia: period estimates from 1982 to 2010. Cancer series no. 69. Cat. no. CAN 65. . Canberra: AIHW.
Baade, P. D., Coory, M. D., & Aitken, J. F. (2004). International trends in prostate-cancer mortality: the decrease is continuing and spreading. Cancer Causes Control, 15(3), 237-241. doi: 10.1023/B:CACO.0000024212.66334.26
Dickman, P. W., & Adami, H. O. (2006). Interpreting trends in cancer patient survival. J Intern Med, 260(2), 103-117. doi: JIM1677 [pii]
Kvale, R., Auvinen, A., Adami, H. O., Klint, A., Hernes, E., Moller, B., . . . Bray, F. (2007). Interpreting trends in prostate cancer incidence and mortality in the five Nordic countries. J Natl Cancer Inst, 99(24), 1881-1887. doi: djm249 [pii]
Yu, X. Q., Luo, Q., Smith, D. P., Clements, M. S., & O’Connell, D. (2012). Challenges in projecting prevalence for prostate cancer: issues and options. Paper presented at the Australasian Prostate Cancer Conference, Melbourne.
Yu, X. Q., Smith, D. P., Clements, M. S., Patel, M. I., McHugh, B., & O’Connell, D. L. (2011). Projecting prevalence by stage of care for prostate cancer and estimating future health service needs: protocol for a modelling study. BMJ Open, 1(1), e000104. doi: 10.1136/bmjopen-2011-000104