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RecruitingInterventional

A population-based digital study offering people testing for cancer genes, to identify people at increased risk of cancer so they can take steps to prevent it or detect it early

PROTECT-C is a UK study exploring a new way to offer genetic testing for certain cancer risks. It’s for women, transgender men, and non-binary people with female reproductive organs, aged 18 and over, who haven't had these specific genetic tests before. You'll use an app to learn about genetic testing for genes linked to breast, ovarian, bowel, and womb cancers. If you choose to have a test, you'll provide a saliva sample at home. This study aims to identify more people at increased risk of these cancers, allowing them to access early screening or prevention options through the NHS. This could help save lives and improve cancer detection.

At a glance

Status
Recruiting
Sponsor
Queen Mary University of London
Enrolment target
5,000
Start
18 Dec 2025
Estimated completion
31 Dec 2029

What is this study about?

The PROTECT-C study is looking into a new way to offer genetic testing to people in the UK. Normally, genetic testing for cancer risk is only available through the NHS if you have a strong family history of cancer or have had certain types of cancer yourself. However, this study believes that many people who have a higher risk due to their genes are being missed by these rules.

This study wants to find out if offering genetic testing more widely could help identify more people who have a higher risk of developing breast, ovarian, bowel, or womb cancer. If you have one of these genetic changes, there are often things you can do to lower your risk, like having regular check-ups or taking preventative medicines. Finding these genetic changes early could help prevent cancers or find them when they are easier to treat, potentially saving lives.

The study will offer genetic tests to 5,000 people to see if they carry certain genetic changes. It will also look at how easy it is for people to use a special app to decide about testing and how it affects their well-being. Ultimately, the goal is to see if this approach could be a good way for the NHS to offer genetic testing to more people in the future.

Key takeaways

  • It's a study exploring a new way to offer genetic cancer risk testing.
  • You'll use an app to learn about the study and decide about testing.
  • A simple saliva (spit) test is used if you choose genetic testing.
  • It aims to identify people at higher risk of breast, ovarian, bowel, or womb cancer.
  • Finding an increased risk can lead to NHS screening or prevention options.
  • Participation helps future cancer prevention and early detection research.

Who may be eligible?

To take part in the PROTECT-C study, you need to be at least 18 years old.

It is open to women, transgender men, and non-binary people who have female reproductive organs (like ovaries or a womb). You also must not have had genetic testing for the specific cancer genes (BRCA1, BRCA2, RAD51C, RAD51D, BRIP1, PALB2, MLH1, MSH2, MSH6) that the study is looking at.

Also, if a close family member (like a parent, child, or sibling) or a less close family member (like an aunt, uncle, or grandparent) has already been found to have a genetic change in these specific cancer genes, you wouldn't be able to join this study.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

  1. Are you 18 years old or older?
  2. Are you a woman, transgender man, or non-binary person with female reproductive organs (like ovaries or a womb)?
  3. Have you ever had a genetic test for the BRCA1, BRCA2, or RAD51 genes (or similar cancer genes listed in the study)? (If yes, you likely can't join.)
  4. Does a close family member (parent, child, sibling) or less close family member (aunt, uncle, grandparent) already know they have a genetic change in the specific cancer genes this study tests for? (If yes, you likely can't join.)
Answer every question to see your result.

What does participation involve?

If you decide to join the PROTECT-C study, you'll first get access to a special app on your smartphone, tablet, or computer. This app contains information, including videos, to help you understand genetic changes, cancer risk, and what genetic testing involves. You'll complete a consent form and a short health questionnaire through the app.

After learning about the test, you'll use the app to decide if you want to be genetically tested. If you choose to, the study team will send you a saliva (spit) test kit in the post. You'll provide the sample at home and send it back using a pre-paid envelope. Your results will be sent to you through the app and email, and by post if you prefer. Support from trained genetic counsellors is available throughout the study via a helpline. If you're found to have an increased risk, you'll receive counselling and be connected to the NHS for further care. The study will also ask you to fill out questionnaires about your health, family history, and app experience over time, and some participants might be invited for optional interviews. The study is expected to involve follow-up for about eight years.

Potential risks and benefits

Taking part in this study could offer several potential benefits. You'll gain a better understanding of genetic testing and cancer risk. If the test shows you have an increased genetic risk for certain cancers, you could access NHS screening or preventive options, which could help detect cancer earlier or even prevent it, potentially saving lives. Your participation also helps researchers learn more about how to make genetic testing available to more people in the future. The study team believes there are no major risks to taking part. However, some people might feel emotional, sad, or guilty if they find out they have a genetic change that could be passed on to their children. Support from specialist counsellors is available before testing to discuss these concerns and is mandatory if you receive a result showing increased risk. Remember, you can choose to stop taking part in the study at any time.

Locations (1)

  • Queen Mary University of London
    Approximate
    London, England

Common questions

What kind of cancers does this study look for?

The study looks for genetic changes that increase the risk of breast, ovarian, bowel, and womb cancers.

How do I provide a sample for testing?

If you choose to have the test, you'll receive a kit to collect a saliva (spit) sample at home and send it back by post.

What happens if the test shows I have an increased risk?

You will receive support and counselling, and you'll be referred to NHS Clinical Genetics and offered screening or prevention options.

Is the information I provide confidential?

Yes, all personal and health information you provide in the study questionnaires is kept confidential.

Can my family members also get tested?

If you are found to have a genetic change, your family members can be offered testing to see if they have inherited the same change, either through the study or the NHS.

How to find out more

Ranjit Manchanda

Always speak to your GP or specialist before deciding to take part in a study.

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