More Information
What is Involved?
PROTECT-C is a completely digital study. You will be given access to an app, which has specifically been designed for this study. The app can be downloaded using your smartphone or tablet, or it can be accessed on any internet browser on your computer or laptop. Before you can access the information on the app, we will ask you to complete a consent form to take part in the study and fill in a short questionnaire.
The PROTECT-C app contains useful information and videos to help you decide whether you would like to have genetic testing. The following information will be covered:
Genetic changes and cancer risk
Breast, ovary, bowel, and womb cancers
How genetic testing is performed
Possible advantages and disadvantages of testing
Other considerations of testing
Possible results of genetic testing
What the test results mean for you and your family
Ways to manage your risk
Cascade (family) testing
When you feel ready to decide, you can make your decision about genetic testing on the app.
In the PROTECT-C study, genetic testing is performed using a saliva (spit) sample.
If you decide to have genetic testing, we will ask you to complete a consent form for genetic testing on the app. We will send you a saliva (spit) collection kit in the post. More information on genetic testing is found on the participant information sheet, which you can download here. Your genetic testing results will be given to you through the app and by email.
As part of the study, we will ask you to fill in questionnaires about your health, history of cancer in your family, experience with using the app, and how genetic testing has affected you. The information you provide in these questionnaires is confidential.
If you decide not to have genetic testing, we will not send you a saliva (spit) collection kit in the post. We will ask you to answer some questions about your experience with using the app and your reasons for not undergoing testing. You will then exit the study and no further action will be required.
If you consented to this, you may be invited to participate in 1:1 interviews by the study team. This will evaluate your experience of making a decision on genetic testing and participating in the study. Participating in these interviews is optional.
Throughout the study, you will be able to call our dedicated helpline, email, or book a virtual appointment to speak to one of our specially trained counsellors.
Why Are We Doing the Study?
Breast, ovary, bowel, and womb cancers make up half of all cancers in women. Around 15-20% (15 to 20 in 100 cases) of ovary and 3-4% (3 to 4 in 100 cases) of breast, womb, and bowel cancers are linked to cancer genes and may be prevented.
People with a genetic change that puts them at increased risk of any of these cancers have ways to help them manage their risk through the NHS. This may include screening to find cancers earlier when they are easier to treat, and surgery or medication to prevent cancers from developing. This can save lives.
This means that this system of testing misses 50% to 80% of people (50 to 80 in 100 people) who have a genetic change. It is thought that only around 3 in 100 people overall who have a genetic change that increases their risk of cancer know about it.
Given the effective screening and preventive options that are available, this represents a huge, missed opportunity to prevent cancers or find them earlier.
Currently, genetic testing is only available on the NHS to people who meet certain criteria. For example, those who have had certain cancers, have a strong family history of cancer, or those with Jewish ancestry. But many people may not have a strong family history, or meet NHS testing criteria.
The PROTECT-C study aims to evaluate the option of offering genetic testing to everyone who may want it. This is regardless of whether they or their families have had cancer. The study will look at how many people decide to have genetic testing and how many of them are found to have a genetic change. It will evaluate their experience with using the app and how this approach to genetic testing affects their quality-of-life, satisfaction, and mental well-being.
This will give us a better understanding of how well the app works as a way of offering genetic testing to people. The study is interested to see how people found to be at increased risk decide to manage their risk. It will also assess if this way of offering genetic testing to people is affordable for the NHS.