How Register4 works
Step 1 - become a Register4 member
To become a member of Register4 you will be asked to provide some information about yourself. This includes information such as your name, contact details, gender and date of birth. By signing up you are only agreeing to receive emails from Register4, letting you know about research that is looking for participants.
Step 2 – receive an invitation to complete the Baseline Health and Lifestyle Questionnaire
The first project you will be invited to participate in as a Register4 member is the Baseline Health and Lifestyle Questionnaire. The first in a series of online Health and Lifestyle Questionnaires, the Baseline questionnaire was developed by the Register4 Epidemiological Questionnaire Design Advisory Group and includes topics such as your family history, reproductive history and your general health.
These questionnaires are important as they provide more information about the health and lifestyle of Register4 members. This allows researchers to investigate potential links between breast cancer and factors such as diet, lifestyle and genetics. It’s your choice whether you would like to complete the Health and Lifestyle Questionnaire, and any subsequent questionnaires. Of course the more people that do, the better, as we want the data from these questionnaires to reflect Australia’s diverse community.
Once you decide to participate in the Health and Lifestyle Questionnaire you will be asked to give consent for the researchers to have access to this information, once your identifying details have been removed. Researchers who apply for access to this de-identified data undergo a rigorous screening process by the Access Committee.
Find out more about completing the Baseline Health and Lifestyle Questionnaire.
Step 3 – invitations to consider participating in a research project
Researchers who require participants for their research projects can apply for access to Register4. This access means that, once their application is approved by the Register4 Access Committee, we will inform Register4 members about the project. We do this by emailing all members and inviting them to find out more about the project online. If you meet the researcher’s selection criteria (such as gender, age, location) and are interested in talking to the researcher to find out more about participating, you can complete an online form to let us know your interest. At this stage we will ask your permission to pass your contact details on to the approved researcher so they can contact you with more information, answer any queries you may have and make sure the project is right for you.
If the researcher feels that after this process the project is not right for you, they will let you know and you will not be able to participate in that project. If you are not suitable for one research project you may be eligible for others. If you are right for the project and are still happy to participate, the researcher will ask if you to give consent to participate in the research project. This consent is different for each project and is approved by an external Ethics Committee.
All research projects accepted by Register4 have undergone a rigorous screening process by the Access Committee, including approval by an external Ethics Committee and scientific review. The types and frequency of research projects you could be invited to participate in can vary and you can say yes or no – the choice is always yours.
Step 4 - Mini-polls
At times we may email Register4 members inviting them to share their thoughts on breast cancer research related topics. Topics for these mini-polls may include questions on the type of breast cancer research you may consider participating in, or the type of research topics you would like to see on the research agenda.
De-identified results of mini-polls will be published on the Register4 website for the benefit for all. Our first mini-poll was sent to members in April 2011.
At all times your responses to the mini-poll are confidential and when the results are published they will always be de-identified. Register4 is a consumer driven resource, which is why your input is so important. As with any Register4 project, the decision to take part is yours alone.
Step 5 - Keeping you informed
Newsletters: All Register4 members will receive a newsletter about 4 times per year, which include news from the breast cancer research community and updates on Register4. You can unsubscribe from general newsletters but still remain a Register4 member to hear about research looking for participants.
Research results: If you do take part in a Register4 research project, we’ll advise you of the results as soon as the researcher is able to release the information. Sometimes this may take a while, over a year or two, because making sense of research results can be a painstaking business.
What if there was something unique about you that could help answer the big questions Australian breast cancer researchers are asking? Join Register4 online today or check out our FAQs if you’d like to find out more.
