Once we have successfully recruited all the participants needed by the researcher, we will add the project to this page. Go to our research results page to see the researchers' publications and findings.


2017

Evaluating health behaviours and beliefs in adult cancer survivors  

Project ID: 2017_007_WAK_01

Associate Professor Claire Wakefield; Behavioural Sciences Unit, Sydney Children’s Hospital

This project recruited participants from Register4. Background Information: The aim of this project was to investigate health issues, health behavior, lifestyle, health literacy and beliefs and attitudes towards new medical technologies in adult cancer survivors.

Recruitment closed August 2017. A total of 879 Register members expressed interest in participating in this project.

 

Breast Edema and Exercise Trial (BEET) 

Project ID: 2015_020_KIL_01

Professor Sharon Kilbreath; The University of Sydney, NSW 

This project recruited participants from Register4 and the community. 

Breast lymphoedema can occur following surgical treatment for breast cancer. This project investigated whether an exercise program can reduce symptoms for women with breast lymphoedema.

Recruitment closed August 2017 A total of 58 Register4 members expressed interest in participating in this project. 

 

The ACTIVATE Trial

Project ID: 2016_003_LYN_01

Dr Brigid Lynch; Cancer Council Victoria 

This project recruited participants from Register4 and the community. Background Information: The ACTIVATE trial tested a new strategy to increase physical activity amongst breast cancer survivors by using a wearable technology activity monitor (Garmin Vivofit 2). 

Recruitment closed August 2017. A total of 30 Register4 members expressed interest in participating in this project.

 

Improving the measurement and understanding of cancer information overload 

Project ID: 2016_010_SMB_01

Dr Ben Smith; Ingham Institute of Applied Medical Research, the University of New South Wales and the University of Sydney 

This project recruited participants from Register4. Background Information: Many people report feeling overwhelmed by the amount of cancer-related information available, often described as “cancer information overload”. This project helped researchers identify the best way to measure cancer information overload and further explore some of the contributing factors. 

Recruitment closed July 2017. A total of 256 Register4 members expressed interest in participating in this project.

 

Rekindle Phase II

Project ID: 2015_017_LAW_01

Dr Catalina Lawsin; The University of Sydney, School of Psychology

This project recruited participants from Register4 and the community. Background Information: Rekindle is a private, personalised online resource that addresses sexual concerns for all cancer survivors and their partners of all genders and sexual orientations. Rekindle teaches proven strategies to enhance sexual wellbeing and answers many of the questions cancer survivors and their partners have after treatment. The aim of this project was to evaluate the benefits of the Rekindle resource and how it can be improved for future users.

Recruitment closed in June 2017. A total of 222 Register members expressed interest in participating in this project.

 

2016

iCanADAPT 

Project ID: 2016_001_ANG_01

Professor Gavin Andrews; St Vincent’s Hospital, Sydney & UNSW

This project recruited participants from Register4 and the community. 

Being diagnosed with cancer can have long-lasting effects on emotional health, causing people to experience on-going feelings of low mood (depression) and on-going worries (anxieties). If these feelings persist, they can affect you, your loved ones and your quality of life. The aim of this project was to assess whether an online program to help manage these feelings is useful and helpful for people who are currently or have previously experienced early stage cancer.

Recruitment closed November 2016. A total of 254 Register4 members expressed interest in participating in this project.

 

Investigating the Prevention of Endometrial Cancer with Metformin (PECAM Study)

2015_002_DAV_01

Professor Susan Davis; Alfred Health and Cabrini Medical Centre, Melbourne.

This project recruited participants from Register4 and the community. Background Information : Tamoxifen is an extremely effective treatment for women who have hormone receptive breast cancer. However, Tamoxifen is associated with changes in the lining of the uterus (which is called the endometrium). The aim of this study was to determine whether treatment with Metformin, a safe and widely used medication used to treat ‘pre-diabetes’ and diabetes, would prevent endometrial changes associated with Tamoxifen as well as increases in abdominal fat and pre-diabetes.

Recruitment closed July 2016. A total of 17 Register4 members expressed interest in participating in this project.

 

Wearable Technology Focus Group

Project ID: 2015_032_LYN_01

Dr Brigid Lynch; Cancer Council Victoria

This project recruited participants from Register4 and the community. Background Information: Increasing physical activity after breast cancer diagnosis has been shown to improve survival and other health outcomes. This project aimed to determine preferences for the types of wearable technology activity monitor, such as fitness bands, for application in increasing physical activity and reducing sitting time among women who have undergone breast cancer.

Recruitment closed May 2016. A total of 10 Register4 members expressed interest in participating in this project.

 

Women’s Wellness after Cancer

Project ID: 2015_007_AND_01

Professor Debra Anderson; Queensland University of Technology

This project recruited participants from Register4.

The aim of this project was to investigate the effectiveness of a 12 week structured lifestyle program in improving health and wellness in women who have had breast, blood and/or gynaecological cancer

Recruitment closed May 2016. A total of 217 Register4 members expressed interest in participating in this project.

 

Young Women & Mastectomy 

Project ID: 2015_033_SAU_01

Professor Saunders; University of Western Australia

This project recruited participants from Register4 and the community. 

The aim of this project was to investigate the experiences and information needs of young women with a family history of breast cancer who have undergone or who are considering a bilateral prophylactic mastectomy.

Recruitment closed March 2016. A total of 30 Register4 members expressed interest in participating in this project.

 

Conquer Fear: A randomised trial evaluating psychological interventions to reduce fear of cancer recurrence

2015_024_SMT_01

Prof Phyllis Butow; The University of Sydney

Fear of cancer recurrence is one of the top issues that cancer survivors report needing help with. The Conquer Fear project is comparing two different psychological treatments to help people better manage fear of cancer recurrence.

Recruitment closed January 2016. A total of 120 Register4 members expressed interest in participating in this project.

 

2015

Monitoring the Effectiveness of the Australian Cervical Cancer Vaccination Program in Reducing Human Papillomavirus (HPV) Infection and Related Disease (VACCINE)

2015_003_GAR_01

Professor Suzanne Garland; The Royal Women’s and Children’s Hospital

In Australia, cervical cancer kills almost 200 women annually. Cervical cancer is caused by the Human Papillomavirus (HPV), most can be prevented by the newly available cervical cancer vaccines if given before HPV infection occurs.
The purpose of this study is to determine the effectiveness of the Australian cervical cancer vaccination program by examining if a) there has been a reduction in Human Papillomavirus (HPV) infection in young women following the introduction of the HPV (cervical cancer) vaccine; and b) if there has been a decrease in the detection of abnormal cells of the cervix due to HPV infection in young women. The study also aims to find out what women understand about the cervical cancer vaccine and the disease it prevents, and about their sexual and reproductive health experiences.

Recruitment closed June 2015. A total of 2 Register4 members expressed interest in participating in this project.

 

What do women want from iPrevent – a breast cancer risk tool

2015_011_KEO_01

Dr Louise Keogh; The University of Melbourne

This project recruited participants from Register4. Background information: iPrevent is a personalised online tool that aims to help women understand their breast cancer risk and what can be done about it. This project assessed the understanding, needs and perceptions of women who might use the iPrevent tool. The data collected will be used to determine how useful the program will be and how it can be improved.

Recruitment closed September 2015. A total of 55 Register4 members expressed interest in participating in this project.

 

Prostmates – Pilot testing of an online psychological intervention for partners of men with prostate cancer

2015_005_WOO_01

Dr Addie Wooten; Royal Melbourne Hospital

This project recruited participants from Register4. Background information: Prostate cancer can impact many aspects of life including psychologically, physically, emotionally and socially or within relationships. Some partners of men with prostate cancer have been reported to experience even higher levels of distress and emotional disturbance than the patients themselves. Current support options tend to focus on the patient, leaving the partner feeling isolated and uneducated on what is happening to their loved one. This project developed a self-directed program to help partners cope with these challenges.

Recruitment closed June 2015. A total of 76 Register4 members expressed interest in participating in this project.

 

The Effect of Timed Therapy in Patients with Advanced Melanoma

2015_018_COV_01

Associate Professor Brendon J. Coventry; University of Adelaide

This project recruited participants from Register4 and the community. Background information: Australia has the highest rate of melanoma in the world and this rate is increasing – with approximately one patient being diagnosed every hour, and 4 patients dying of melanoma per day. Advanced melanoma survival remains dismally poor with the best currently approved therapies delivering a 4-year survival of <1-2% and with a rate of complete regression of all melanoma of only <1-2%. For over 12 years, a safe, non-toxic melanoma vaccine treatment for advanced melanoma has been tested on over 50 patients and has seen results showing a complete response (CR) rate (where all cancer disappears) of nearly 17%. This study tested whether the timing of delivery of therapy to patients with advanced melanoma (Stage III/V), and who are not candidates for surgery, affected patient outcomes.

Recruitment closed August 2015. This project had specific criteria that were met via other mechanisms.

 

Cancer and Fertility

2015_014_USS_01

Professor Jane Ussher; University of Western Sydney

This project recruited participants from Register4 and the community. Background Information: Cancer can affect fertility in a number of ways. Infertility can be caused by the disease itself or its related treatments, which can lead to psychological distress and loss of hope for future fertility. Changes to fertility can be experienced as the most difficult long term effect of cancer diagnosis and treatment. This project examined the nature and consequences of fertility concerns for men and women with cancer and their partners across a range of cancer types, as well as the knowledge and experience of oncology health professionals.

Recruitment closed August 2015. A total of 366 Register4 members expressed interest in participating in this project.

 

Information about cancer and fertility: evaluating a self help book

2015_016_USS_01

Professor Jane Ussher; University of Western Sydney

This project recruited participants from Register4 and the community. Background Information: Changes to fertility is a common consequence of cancer diagnosis and treatment. Some people find self-help information packages useful in helping them cope with this. Research has also shown that health professionals can play an important role in helping people cope with changes to fertility. The aim of this project was to compare booklet only support to having both a booklet and discussion with a health professional. For more information on a self-help book that was developed as part of this project, go to: http://www.uws.edu.au/centreforhealthresearch/research/cancer_and_fertility/cancer_and_fertility_self-help_guide.

Recruitment closed August 2015. A total of 42 Register4 members expressed interest in participating in this study.

 

Finding My Way: Online self-help therapy for individuals affected by early stage cancer.

2015_008_BEA_01

Dr. Lisa Beatty; Flinders University, SA

This project recruited participants from Register4 and the community. Background Information: Finding my Way is an internet based coping program that provides a convenient, user friendly way to learn skills to improve physical and mental wellbeing during treatment for cancer. The program consists of six online modules released once a week for 6 weeks, covering a range of topics including starting treatment, physical symptoms, emotional distress, identity, impact on family and friends and completing treatment. The aim of this project was to evaluate how effective an online self-help coping program is for people affected by early stage cancer.

Recruitment closed August 2015. A total of 28 Register4 members expressed interest in participating in this project.

 

Forgotten Cancers

2015_004_GIL_01

Professor Graham Giles, Cancer Council Victoria

This project recruited participants from Register4 and the community.
Background Information: Significant progress has been made in understanding, treating and even preventing the most commonly diagnosed cancers; however less common cancers remain considerably under researched even though they account for around half of all cancer deaths. With the help of 15,000 participants this project will study the role of genes, lifestyle and early life environment in the development of less common cancers such as non-Hodgkin lymphoma, leukaemia, multiple myeloma, kidney, bladder, stomach, brain, liver, oesophageal, pancreatic, endometrial/uterine, thyroid, gallbladder, small intestine, bone and other rare cancers.

Recruitment closed June 2015. A total of 196 Register4 members expressed interest in participating in this project.


Sexual Wellbeing after Prostate Cancer

2015_015_USS_01

Professor Jane Ussher, University of Western Sydney

This project recruited participants from Register4 and the community.
Background Information: This study examined the psychological burden of changes to sexual wellbeing, sexual identity and intimate relationships in heterosexual and non-heterosexual men with prostate cancer. This comparative study marks a crucial and timely examination of how prostate cancer affects heterosexual, gay and bisexual men. The information gained will inform tailored health care provision and facilitate ongoing support post cancer. The results will provide the research team with an understanding of the specific experiences and needs of heterosexual and non-heterosexual men with prostate cancer.

Recruitment closed April 2015. A total of 70 Register4 members expressed interest in participating in this project.

 

Physical & Psychosocial Needs of Adult Cancer Survivors

2015_019_KAN_01

Doctor Maria Kangas, Macquarie University

This project recruited participants from Register4.
Background Information: This project investigated the following 3 aims:

  • The physical, emotional and psychosocial effects of adults living in Australia who have been diagnosed and treated for a cancer, including longer-term survivors.

  • Whether other pre-existing health conditions (e.g. asthma, diabetes etc) and life stressors (e.g. relationship problems, work stresses etc) have interfered with and/or complicated recovery from cancer.

  • The professional service needs (including access to physical and psychological treatments) for adults who have been treated for a cancer (including longer-term survivors), as well as identifying factors that may interfere with access or uptake of current services that are available for adults who have been diagnosed with cancer.

Recruitment closed Feb 2015. A total of 540 Register4 members expressed interest in participating in this project.

 

Selected Projects From Previous Years

 

Cancer and Sexuality

Recruitment for this project has now been successfully completed.

Professor Jane Ussher; University of Western Sydney

While it is widely recognised that cancer and its treatment can have a significant effect on the quality of life of both people with cancer and their family members, in particular their intimate partner, sexuality is rarely addressed by health professionals. This online survey asked about experiences of sexuality and intimacy after cancer. Based on the survey's findings, programs of couple interventions will be developed and evaluated.

Recruitment for this project closed in 2013. A total of 390 Register4 members expressed interest in participating in this project.

 

Mammographic Density in Young Women - a Breast Cancer Family Study follow up

Recruitment for this project has now been successfully completed.

This project was only looking for people who participated in Professor Hopper's Breast Cancer Family Study, as was an extension to that study. Following on from the information already provided by participants, the researcher requested participants in this study to provide copies of their mammograms in order to ascertain whether mammographic density is also a breast cancer risk factor for young women, in particular, women under the age of 40 years.


Mammographic Density in Young Women and their Relatives

Recruitment for this project has now been successfully completed.

Studies have shown that mammographic density, the amount of white area on a mammogram, is a strong risk factor for breast cancer for women over the age of 40 years. This project aims to know whether mammographic density is also a breast cancer risk factor for young women, in particular, women under the age of 40 years.


Information and Support Needs

Recruitment for this project has now been successfully completed.

A study was done 10 years ago to explore the information and support available to women who had completed treatment for breast cancer. A new national study aimed to replicate the original project and collect up to date information about the support that is currently available to women following treatment for breast cancer.

Recruitment closed 2013. A total of 206 Register4 members expressed interest in participating in this project.

 

Breast Cancer Family Study (ABCFS)

Recruitment for this project has now been successfully completed.

The Australian Breast Cancer Family Study started in 1992 and has studied more than 2,500 families. They have found that BRCA1 mutation carriers can best be identified by studying tumours of women with early-onset disease. The researchers would now like to recruit women from families with a strong family history of breast or ovarian cancer.