RecruitingNAINTERVENTIONAL

Population Based Germline Testing for Early Detection and Prevention of Cancer

The PROTECT-C study explores offering genetic testing to anyone who wants to know if they carry a gene that increases their risk of breast, ovarian, bowel, or womb cancer. Currently, genetic testing on the NHS is quite limited, missing many people with these inherited risks. This study wants to see if offering testing more widely could help prevent cancers or find them earlier, potentially saving lives. Participants will use an app to learn about genetic testing and, if they choose, provide a saliva sample. Researchers will see how many people take the test, how many have a gene change, and how this affects their mental well-being and decisions about managing their health. It's a key step to see if wider genetic testing could become a regular part of NHS care.

At a glance

Status

Recruiting

Phase

Sponsor

Queen Mary University of London

Enrolment target

6,000

Start

18 Dec 2025

Estimated completion

01 Dec 2040

Breast Cancer Risk Ovarian Cancer Risk Cancer Gene Mutation

What is this study about?

The PROTECT-C study is trying to find out if offering genetic testing to a wider group of people could help prevent certain cancers or find them earlier when they are easier to treat. We know that some people have changes in their genes that make them more likely to get breast, ovarian, bowel, or womb cancer. These types of cancers make up a large number of all cancers in women.

Currently, genetic testing for these gene changes is only available on the NHS for certain people, for example, if they have had particular cancers, have a strong family history, or are of Jewish descent. However, this means that many people who actually have these gene changes aren't found. Finding these changes means people can take steps to manage their risk, like having special checks (screening) to spot cancer early, or even having preventative treatments or surgery. This could be very important for saving lives, but we're missing many chances to do this.

This study wants to see what happens if we offer genetic testing to more people, even if they don't have cancer in their family. We will do this by providing an app where people can learn about genetic testing, decide if they want to be tested, and then receive a saliva test kit at home. The study will look at how many people choose to be tested, how many have a gene change, and how this process affects their lives. This will help us understand if this approach could work well and be affordable for the NHS in the future.

Key takeaways

This study offers genetic testing for inherited cancer risks.
It aims to find gene changes that increase the risk of breast, ovarian, bowel, or womb cancer.
The testing is done digitally via an app and a home saliva kit.
Finding a gene change can lead to preventative options and earlier cancer detection.
It’s exploring if genetic testing should be offered more widely than it is currently on the NHS.
Participation is voluntary and information is kept confidential.

Who may be eligible?

You might be able to join the PROTECT-C study if you are a woman, a trans man, or a non-binary person who has female reproductive organs (like ovaries). You need to be 18 years old or older.

It's important that you haven't already had genetic testing for the specific cancer genes that this study is looking at. Also, your close family members (like parents, children, siblings, aunts, uncles, or grandparents) should not have been found to have these specific genetic changes. This helps the study look at people who haven't had previous genetic risk information.

Essentially, the study is for adults who have female reproductive organs and haven't previously been tested for these specific cancer genes, nor do they have a close relative already known to have one of these gene changes.

Quick self-check

Are you 18 years old or older?
Are you a woman, trans man, or non-binary person with female reproductive organs?
Have you never had genetic testing before for the specific cancer genes in this study?
Do your close family members (like parents, siblings, children) not have these specific gene changes?
Do you have a smartphone, tablet, or computer with internet access?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you decide to take part in the PROTECT-C study, you won't need to visit a clinic. Everything is done digitally using a special app on your smartphone, tablet, computer, or laptop. First, you'll complete a consent form and a short questionnaire about yourself and your health through the app. The app also has information to help you understand genetic testing.

If you choose to have genetic testing, you'll give permission through the app, and the study team will send you a saliva test kit by post. You'll simply provide a saliva sample at home and send it back. The study will then follow up on how you use screening or prevention options if a gene change is found. A small number of participants might be invited for an optional interview to share their experiences. The total duration of your active involvement will depend on whether you have testing and how you choose to manage your risk, but generally, it's about making decisions and then the study observing your choices through the app.

Potential risks and benefits

Taking part in this study could offer you the benefit of knowing if you have a genetic change that increases your risk of certain cancers. This knowledge could empower you to take preventative steps or get earlier screenings, potentially improving your health outcomes. However, knowing about an increased risk might also cause worry or anxiety. The study aims to understand these emotional impacts. Your privacy will be protected, and all your information will be kept confidential. Remember, participation is completely voluntary, and you are free to withdraw at any time without giving a reason, and this will not affect your standard medical care.

Locations (1)

Wolfson Institute of Population Health, Queen Mary University of London
London, United Kingdom· Recruiting

Common questions

What kind of cancers does this genetic testing look for?

This testing specifically looks for genes that increase the risk of breast, ovarian, bowel, and womb cancers.

How do I take the genetic test?

If you decide to be tested, the study will send a saliva test kit to your home. You'll provide a saliva sample and mail it back – no blood tests or clinic visits are needed for this.

What happens if a genetic change is found?

If a genetic change is found, NHS services can offer ways to help you manage your risk, such as special screenings to find cancers early, or medicines or surgery to prevent them.

Will my family be told about my results?

No, your genetic information is private. The study will not share your results with family members without your permission.

Do I have to pay to take part?

No, taking part in the PROTECT-C study, including the genetic testing, is completely free of charge. The study is funded by research grants.

How to find out more

Ranjit Manchanda, PhD

r.manchanda@qmul.ac.uk +44 8008620236 Official trial record

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