LifePool - Australian women finding answers

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Forms and Documents

It’s your choice

What does Participating Involve?

Frequently asked questions

Forms and documents

All the forms are here for you to read. The on-line system is secure and simple to use and has been developed to keep our costs low and make joining lifepool as quick and easy for women as possible.

If you prefer, we are happy to mail out a document pack to you. Send an email to Lisa at (click here) to request a pack. You can also print these forms at home if you like but please ensure you print single sided, black & white documents. After you have completed them, please post back to us at the lifepool project using the following Reply Paid address (you don’t need to use a stamp):

NBCF BreastScreen Cohort Project
Attn. L. Devereux
Research Division, Peter MacCallum Cancer Centre
Reply Paid 86395
Locked Bag 1

1. Lifepool Participant Information Form Version 3.0 (PDF) -click to download
This is the form you must read before participating in the lifepool Project. It provides an explanation of how the project will operate and just what you will be asked to agree to.

2. Lifepool Consent Form, Questonnaire & optional Consent to Medicare & PBS data access V 4.32 (PDF).click to download.

In signing the lifepool consent form, you agree to allow lifepool to collect information about you (as explained in 1. above) and permit lifepool to use this information, along with the information in your Questionnaire, to support research into breast cancer and other women's health issues.

Lifepool Questionnaire
Using this form, we collect health and lifestyle information from women who agree to be part of the lifepool Project. This information will be stored in a highly secure database. No identifying information is stored in this database, only your confidential Study ID number.

Lifepool Consent form 2 for release of Medicare and PBS information .This second form is an optional part of the consent process. Signing this form will allow lifepool to request information from the Medicare and PBS database over the last 41/2 years. You can still be part of lifepool without signing this second consent form.

Withdrawal of Consent Form Version 1.0 (PDF) - click to download
This is the form you need if you wish to change the way you are participating in the lifepool Project. You can withdraw from the project completely or ask us not to contact you anymore.

Stage 2 PICF for DNA Donation Version 1.0 (PDF) click to download
This second Information and Consent form provides information about donating a sample of DNA for research. Although we ask you to donate a blood sample, you can also choose to donate a saliva sample if you would prefer

It's your choice

It is entirely up to each woman to decide if The lifepool Project is right for her.

If you express interest by email, we will send you the link to our secure on-line system. If we don't hear back from you within 2 weeks, a single reminder email will be sent. We will not contact you again if you change your mind about participating.

You will continue to be contacted by BreastScreen and encouraged to have regular screening mammograms. We all know that’s a good thing to do to help detect the early signs of breast cancer.

If you decide to be part of the lifepool Project, you can change your mind at any time. Sometimes women are happy to allow information to be used for research but they do not want to be contacted. The ‘Withdrawal from the Cohort Project’ form lets you tell us exactly how you want to change your involvement.

What does participating involve?

Being part of the lifepool Project involves completing a Health and Lifestyle Questionnaire as the first step.

The Questionnaire might take about 30 minutes to complete if you choose to do it all in one session. The time taken will depend on how many sections apply to you. For example, if you have never taken Hormone Replacement Therapy and do not smoke, you will need to complete 2 less sections than a woman who smokes and is taking HRT. You can close the on-line questionnaire and return to it using your personalised link at any time.

When you are part of the lifepool Project, you agree to us gathering information about you from your medical record and some health related registers or databases. If you were to develop breast cancer, you agree to let us collect some of the left over cancer tissue from the Pathology Lab. You trust us to treat this information and tissue with the utmost care and confidentiality. You also trust that only the best research projects get access to information gathered by the lifepool Project. Human Research Ethics Committees are the groups of people we trust to assess human research projects. In addition, the National Breast Cancer Foundation Access Committee carefully reviews applications for access to the lifepool resource.

The lifepool Project will keep you informed about research findings by distributing a regular Newsletter containing a summarized version of significant research results. When researchers use data or samples from lifepool, the detailed research results will be published in peer-reviewed, scientific journals to make sure knowledge is shared amongst the community. Information is also delivered back to the lifepool Project. If a research project generates results thought to be of relevance to the health of individual lifepool Participants, it will be carefully examined by an appropriate team of ethical and medical advisors and we will do our best to contact you so that you can decide if you want to learn more about that information.

In the future we might get in touch to ask you to complete another questionnaire. We may ask you to donate a blood sample or a saliva sample for DNA extraction. This is completely optional. You can say 'no' to donating blood or saliva and still be part of lifepool.

You can tell us whether you prefer a phone call, an email or a letter and you can change your mind at any time ( go to ‘It’s your choice’ for more information)

The protection of data is absolutely critical to the way we have designed our systems. Each woman is given a unique Project ID number. This number is used to label all information and samples. This process protects your privacy whilst allowing linkage of data and samples.

The answers you provide to the Questionnaire are stored on a dedicated password protected database. No identifying information about you is stored on that database, only your Unique Project number.

Being part of a powerful collaboration with other women around Australia
The information each woman contributes will form a pool of valuable data into which researchers can ‘dip’ to answer current and new questions about breast cancer and other women’s health issues.

All research questions are different in subtle ways. The real value of lifepool is that we can combine each woman’s information in just the right way to answer each question. Each precious drop of data can be used many times over in many different ways.

Frequently asked questions

Is it Australia Wide?
The lifepool Project was originally funded by the National Breast Cancer Foundation for 5 years in Victoria. Now that we have demonstrated how well lifepool is accepted by Victorian women, our funding has been extended to allow women around Australia to join. NBCF also invites women to join Register4 ( to support other research around breast cancer and other health issues.

Is there a follow up letter?
After the first email we send to you containing your link to the on-line system, lifepool will contact you once more within 2 weeks if you haven't responded. Iif you choose not to take up the Invitation, we will not contact you again. You can change your mind later and get in touch with us. You will be welcome to join any time.

For how long will I be involved and how long does The lifepool Project go for?
Lifepool will run until at least the end of 2019 and, we hope, will be funded for much longer. If you choose to participate, your information will be available for research for many years, perhaps as long as 20 years.

Why can’t men participate? They can get breast cancer.
The incidence of breast cancer in men is over 100 times lower than for women. Screening mammography is not a useful technique for screening men in the broad population. Because lifepool needs to collect mammogram images, only women are invited. Men who have signs or symptoms of breast cancer are investigated using ultrasound and other methods.

Although the research focuses on breast cancer in women, it is most likely that the research will improve treatments for and prevention of breast cancer in men too.

Can the Questionnaire be answered one section at a time?
You can take as long as you like to complete the on-line questionnaire. You can close it and return using your unique link as many times as you like. Please remember to keep this link just for you as it has been generated for you only. If you have a friend or family member who is interested in joining, ask her to contact us by email and she will be sent her own unique invitation.

Is it only for women over 50?
The target age group for inviting women to BreastScreen is aimed at women over 50 years old. Women from the age of 40 are welcome to attend for a mammogram and if they choose to get in touch with The lifepool Project, they are most welcome to join. Any women over the age of 18 years who has had, or intends to have, a screening mammogram is welcome to join.

Collaborators           Funded by
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Contact us: 1800 198 082 or 03 8559 6532 Privacy and confidentiality