"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A study to find the key messages that women with breast or ovarian cancer need about BRCA gene changes
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
This study is trying to work out what information about BRCA gene changes is most important for women with breast or ovarian cancer.
In women who have a BRCA1 or BRCA2 gene mutation there is an increased risk of getting breast cancer and ovarian cancer.
If a woman has genetic testing after being diagnosed with breast or ovarian cancer and a BRCA1 or BRCA2 gene mutation is found, genetic testing is also then available for her relatives. But there is no agreement about the information that women with a BRCA gene mutation should have.
It is important to work out the key messages women need because this may affect the decisions they make about managing their own cancer risk and informing other family members.
In this study, researchers will survey women who have had breast or ovarian cancer and have a BRCA gene mutation. They will also survey genetics and cancer specialists. The researchers want to find out what information women need, and when it is best for them to receive this information.
Who can enter
You may be able to enter this study if you
- Have (or have had) breast cancer or ovarian cancer
- Have a cancer causing mutation in the BRCA1 or BRCA2 gene
- Had genetic testing to find the gene mutation after 2006 and this was done in the UK
- Were the first person in your family to be found to have the gene mutation
The study team will survey 16 women who have had breast or ovarian cancer and who have a mutation in the BRCA 1 or BRCA 2 gene. They will also survey 8 genetics specialists and 8 cancer specialists.
If you take part in the study, the researchers will ask you to look at the information about BRCA1 or BRCA2 gene mutations that is given to women with breast or ovarian cancer. They will ask what you think the key messages are and when you think it is best to give women this information.
They will then ask you to look at responses from all the other people taking part to see if there is agreement.
All the information you give is
There are no extra hospital visits, but the study team may contact you up to 3 times. You look at the information at home. It may take up to an hour the first time you review the information and about half an hour each time you look at other people’s responses.
There are no side effects from taking part in this study. If it does raise any concerns for you, the study team suggest you contact a breast cancer support organisation and you will be given the number of a telephone helpline. If they can’t answer your questions, you can contact your Regional Genetics Centre or your GP.
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.
Ms Chris Jacobs
NIHR Doctoral Research Fellowship
University College London (UCL)