FAQs for individuals
Following are some frequently asked questions that may help to answer any queries you have about Register4. Click on the + symbol next to any of the questions below to display the answer.
FAQ: What is Register4?
Register4, an initiative of the National Breast Cancer Foundation (NBCF), is an online community that brings you together with breast cancer researchers for the joint purpose of finding answers faster.
Ultimately, we believe Register4 can significantly change the course of breast cancer research in Australia. It may also answer questions about other diseases too.
It's free to join and open to anyone aged 18 or older. You do not need to have had breast cancer to join Register4.
FAQ: Why should I join Register4?
We all fit a lot into our busy schedules. But it’s not every day we get the chance to do something amazing that has the potential to save lives. Imagine if there was something special about you that held the answers to a future free from breast cancer? Wouldn’t you want to help?
FAQ: I don’t have breast cancer. Can I still join Register4?
Of course. Breast cancer impacts on the lives of everyone. Anyone aged 18 or over is invited to join.
FAQ: Why do we need a national research register?
Breast cancer is still the most common cancer affecting Australian women, and over the last few decades its incidence has been on the rise.
More research is needed so we can pinpoint better preventative measures and help find a cure. The issue however is that researchers speak often of how long it can take to find the right people to participate in their work. (It can sometimes take years)
The more people who join Register4, the fewer delays and the faster researchers can get to work.
FAQ: I’m already a member. How can I find out about research projects?
We’re busy recruiting members and we will soon be able to offer research projects to Register4 members. Once this happens, we will email you about new projects and their requirements as soon as they are approved by our Access Committee. After you have read about the project, if you’re keen to take part, you can let us know via the Register4 website.
FAQ: If I agree to participate in a project, what will I be asked to do?
Breast cancer research projects vary. Some might be questionnaires, while others might need a sample of blood, urine, saliva, breast fluid, or breast tissue. Some might even be clinical trials testing a new detection marker or drug.
What we can say is that it’s always your choice – it’s up to you to decide what you’re comfortable doing. You’re welcome to say no at any time.
FAQ: Can men join Register4?
Absolutely. While less than 1% of all breast cancer cases occur in men, anyone aged 18 or older is encouraged to join Register4.
Our vision for Register4 is to eventually answer questions about a range of health issues, such as prostate cancer, diabetes and mental illness. Naturally, this will create further opportunities for men to participate.
FAQ: What does Register4 hope to achieve?
Our ultimate goal is to prevent and cure breast cancer. We want as many people as possible to join Register4’s online community – a massive database of passionate people that will facilitate and fast-track breast cancer research. Ambitious? Yes. Achievable? We believe so.
FAQ: How will you protect my privacy?
Your privacy and peace of mind is very important to us. Register4 keeps your contact and personal information completely confidential. All Register4 staff with access to the database also sign a confidentiality agreement.
FAQ: What do you do with my details?
Your details are kept safe by the National Breast Cancer Foundation. They are never given to a third party, unless you’ve given your consent by expressing interest in participating in a project and agreeing for us to release your contact details to the researcher running the project.
The information you provide in our Health and Lifestyle Questionnaire is supplied to researchers whose projects have been accepted by our Access Committee. Please be assured that all identifying information – such as your name, address and contact details – will be removed before the questionnaire data is given to the researcher.
FAQ: I’m a member. How long will I have to wait to participate in a project?
All Register4 members will be invited to complete the Baseline Health and Lifestyle Questionnaire, which is available now.
In terms of other projects, it varies. Each study requires people with a different set of characteristics, so we can’t precisely pinpoint how long it may be until there is a project that is looking for someone with your characteristics.
In the meantime, there are lots of other ways you can help. Check out the Get Involved section for more information.
FAQ: Will it cost me anything to participate in Register4?
No. It’s free to join Register4. That said, each project has separate requirements and will outline from the start if there are any costs (travel, for example) involved.
FAQ: How is Register4 funded?
The National Breast Cancer Foundation currently funds Register4. In the long term we may look at other suitable partners to help ensure we can continue to reach our goals.
FAQ: Can I join Register4 if I’m not in Australia?
Most definitely, we’d love to have you with us. The number of projects you can participate in may be more limited, but when something comes up that’s right for you, we’ll definitely be in touch.
FAQ: How can I make a complaint?