“Deborah agreed to take part in a trial as she was keen to help other cancer patients in the future. "If taking part in a trial means others might be helped then I’m very happy with that."
A study looking at family communication about breast cancer that runs in the family
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
This study is looking at how children learn about and come to understand the risks linked to having a faulty BRCA gene in their family, and the effect sharing this information has on children and parents.
We know that if you carry a faulty BRCA gene in your
- Children learn about and understand hereditary breast cancer risks
- This information might affect their health and life choices
- Parents are affected by sharing this information with their children
And to use a questionnaire with related health professionals to
- Find out what advice genetic counsellors give to parents about talking to their children
- See which genetics units can help with a full study following on from this pilot study
The team hope to be able to offer parents and health professionals information and advice about how children learn, and the type of reactions parents might expect. The results from the study will be used to help health professionals support families in the future who are dealing with
Who can enter
People taking part in this study will be recruited by staff involved in genetic counselling at the West Midlands Cancer Genetics Unit.
You may be able to enter this study if your family has a known change (fault) to the BRCA gene, with one parent having a strong family history, or having tested positive for the gene.
You cannot enter this study if you are a child under the age of 4, or if your parents have not talked to you about hereditary breast cancer risk.
If, as parents of a family who may be able to take part, you are not willing to allow interviews with children who are old enough to take part the research team will only interview you. If you have a child of 15 or younger, you will need to give permission for the research team to interview them. Once the team have your permission, they will then ask the child if they are happy to take part.
The team think that children and young people should only take part in this study if parents feel confident that they and their children are able to openly discuss hereditary breast cancer with each other.
This is a pilot study. It will recruit about 6 to 10 families. If successful, the pilot work will help a much larger study. This larger study will look at the outcomes for children and young people of knowing about hereditary breast cancer risk. And compare them with those of children not given information until the age of 18.
If you agree to take part, trained researchers will interview you and your children. They will encourage your children to use drawings and pictures, if they want to, to explore their experiences. You can choose to have the interview as a family group, or as individuals.
The interviews will last between 30 to 90 minutes, and be recorded using a voice recorder.
Health professionals from the clinical genetics units and cancer units taking part will complete a short questionnaire.
Wherever possible, the team will interview families in their homes. But if you prefer to travel to the university or elsewhere for the interviews, the team will pay your travel costs.
The interviews will cover sensitive information asking you and your children about your experiences of talking and learning about inherited breast cancer. The questions are designed to find out about your children’s experiences without giving them any new information. But some children may raise questions with the researchers that they had not spoken about with you before. When you contact the team to confirm that you are interested in taking part, they will discuss with you in more detail how they will handle this if it happens.
It is unlikely that you will have any problems as a result of taking part. If the interview raises any questions, the researchers would not be able to help you with any queries related to your particular situation. But they will recommend that you raise these with your family doctor, clinical genetics specialist (geneticist) or genetic counsellor.
How to join a clinical trial
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Professor Alison Metcalfe
Breast Cancer Campaign
National Institute for Health Research Cancer Research Network (NCRN)