What is Register4?
Register4 is a national online database that brings women and men together with cancer researchers for the joint purpose of fast-tracking cancer research.
Ultimately, we believe Register4 can significantly change the course of cancer research in Australia.
It's free to join and open to women and men aged 18 and over. You do not need to have had cancer to be part of Register4.
Why should I join Register4?
We all fit a lot into our busy schedules, and it’s not every day we get the chance to do something amazing that has the potential to save lives. By providing researchers with a pool of women and men to participate in their approved studies, you are able to cut down the cost and recruitment time from typically 2 years to 48 hours.
I don’t have cancer, can I still join?
Of course, we welcome women and men with or without cancer, aged 18 or over to join, because cancer impacts on the lives of everyone and over the last few decades its incidence has been on the rise.
In addition, whilst cancer is still the most common disease affecting everybody, healthy people are very important to researchers and their projects. The more detailed information they gather, the quicker they will be able to find answers to the big questions.
Why do we need a national research register?
Research has come a long way, but not yet far enough. More research is needed so we can pinpoint better preventative measures and help deliver greater health benefits from cancer research. Researchers speak often of how long it can take to find the right people to participate in their work. It can sometimes take 2 years to fill a project. By accessing Register4, they have been able, in most cases, to do this in 48 hours. The more people who join Register4, the fewer delays and the faster researchers can get to work. Every member makes a difference!
I’m already a member – how can I find out about research projects?
When a new project is approved by our Access Committee, we’ll send members an email invitation and also publish it on our website. If you'd like to learn more about the project and express your interest in participating, follow the prompts in your email invitation or on the website. The Register4 website has a list of all the current projects seeking volunteers.
If I agree to take part in a project, what will I be asked to do?
Cancer research projects vary. Some might involve questionnaires, others may require keeping a journal, attending an appointment or providing a sample of hair or blood. From time to time, you may be invited to participate in a group study, close to your home.
It’s always your choice to participate, and what you’re comfortable doing. You’re welcome to opt out at any time.
Can men join Register4?
Absolutely. While Register4 was seed funded by the National Breast Cancer Foundation, it is vital that we have both women and men. We ask everyone over the age of 18 years to join so their answers truly reflect the diverse community in which we live.
What does Register4 hope to achieve?
Our aim is simple – to fast-track the time and money researchers spend on recruiting so they can spend more time on cancer research and deliver greater health benefits to the whole community.
To do this we need as many people as possible to join Register4 and provide researchers with a massive database of passionate people to accelerate cancer research.
Ambitious? Yes. Achievable? Absolutely!
How will you protect my privacy?
Your privacy and peace of mind is very important to us. Your personal information is completely secure, private and confidential. In addition, all Register4 staff with access to the database sign a confidentiality agreement.
Our researchers are required to undergo stringent access and approval committees before their projects are accepted and sent to you. Nothing will be shared with a researcher without your express permission, and then it is de-identified until you have said otherwise. In addition, your details are kept safe by regular audit processes to meet our very strict policies and codes.
What do you do with my details?
Your details will never be given to a third party, unless you’ve expressed interest in a project and given your consent for us to release your contact details to the researcher running the project.
If you completed the Health and Lifestyle questionnaire, the information you provided 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 – is removed before the questionnaire data is given to the researcher.
Will it cost me anything to participate in Register4?
No, it’s absolutely free to join. All we ask for is your time to answer some questions. From time to time you may be asked to provide a hair sample or perhaps meet up in your local area. However, as with everything about Register4, it is always your decision to participate.
How is Register4 funded?
Register4 was established with seed funding from the National Breast Cancer Foundation. Longer term, we are looking for other suitable partners to ensure we continue to reach our goals.
Can I join Register4 if I am not in Australia?
Most definitely, we’d love to have you with us. Questionnaires will be easy; however some of the projects may be more limited.
How can I make a complaint?