Developing genetic tests to diagnose, monitor and guide treatment decisions for children and young people whose cancer has returned
This UK study examines the genes in cancer cells and healthy cells of children and young people whose cancer has returned or isn't responding to current treatments. By comparing these genes, researchers hope to find specific changes that can help guide new, more personalised cancer treatments. We also aim to detect changes earlier than traditional scans. While it's unlikely to directly benefit the participants immediately, the information gathered is vital for developing better treatments for future patients. Participants usually provide blood and tumour samples. An expert panel will review findings and may suggest treatment options, but the main goal is research to improve overall cancer care for young people.
At a glance
What is this study about?
This important UK research study is looking for tiny changes in the genes of children and young people with cancer that has either come back after treatment (relapsed) or isn't getting better with current treatments (refractory). Our bodies are made of tiny building blocks called cells, and inside each cell is a set of instructions called genes. Cancer happens when these instructions go wrong.
In this study, we'll carefully compare the genes in a patient's healthy cells with the genes in their cancer cells. This helps us spot differences that might be driving the cancer. We'll also follow participants over time to see if we can find these changes earlier than regular scans might. The main goal is to understand how these genetic differences can help doctors choose the best treatment for each person, making cancer care more 'personalised'. While it might not directly benefit the participant right away, this research is crucial for finding better ways to treat cancer in young people in the future.
After samples are taken, an expert team will look at the results and may suggest different treatment approaches to the patient's doctors, like special clinical trials. Patients and their families will also have a chance to decide what kind of information they want to receive about any genetic findings. The information we collect will build up a bigger picture to help medical researchers learn more about these cancers.
Key takeaways
- This study looks at genes in young people's cancer cells to find new treatment ideas.
- It aims to personalise cancer treatment for children and young people.
- Participation involves providing blood and/or tumour/bone marrow samples, often part of routine care.
- Direct personal benefit is unlikely, but the research helps future patients.
- The study is for children and young people (up to 21, sometimes older) with relapsed or refractory cancer.
- Information from the genetic tests will be shared with your doctor to help guide your care.
Who may be eligible?
This study is particularly for children and young adults in the UK, generally aged 21 and under. If your cancer is usually considered a 'childhood cancer' and you're slightly older than 21, you might still be able to join. The most important thing is that your cancer has either come back after treatment or isn't responding well to the treatment you're currently getting.
To be included, you must have a solid tumour (which includes cancers in organs or soft tissues, and lymphomas) or leukaemia. For solid tumours, we'll need a sample of your tumour that was taken recently, usually within the last eight weeks, as part of your normal hospital care. For leukaemia, we'll need a bone marrow sample, also taken recently as part of your usual care. Sometimes, if a bone marrow sample isn't suitable, a blood sample might be used instead.
Before you can join, you or your parent/guardian will need to read and sign a consent form, which means you agree to take part after understanding what's involved. Your doctor can help you understand if this study might be right for you.
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.
- Are you aged 21 or under (or slightly older with a specific childhood cancer)?
- Has your cancer come back or is it not getting better with current treatment?
- Do you have a solid tumour (like in an organ or lymphoma) or leukaemia?
- Can a recent sample of your tumour or bone marrow (taken in the last 8 weeks) be used?
- Are you and/or your parents willing to give written agreement to take part?
- Are you being treated at one of the participating UK hospitals?
What does participation involve?
If you decide to take part, you'll mainly be providing samples that are often collected during your routine hospital care. For those with a solid tumour, this means giving a blood sample and a piece of the tumour tissue that was taken during a recent biopsy or surgery. If you have leukaemia, you'll provide a bone marrow sample, which is usually taken as part of your ongoing treatment. If these samples have already been collected for your usual care within the last eight weeks, we can use those.
Apart from these samples, you won't need to make extra hospital visits just for the study. The blood tests you might have will be similar to any other blood test you've had. The information from your samples will be analysed by experts, and the results will be given to your own doctor. They might then suggest other treatment options, like different clinical trials, if something useful is found. You and your family will also get to choose what information you'd like to hear about the genetic test results.
Potential risks and benefits
Locations (20)
- NHS GrampianApproximateAberdeen, United Kingdom
- Cambridge University Hospitals NHS Foundation TrustCity onlyCambridge, United Kingdom
- Alder Hey Childrens NHS Foundation TrustCity onlyLiverpool, United Kingdom
- Belfast City HospitalApproximateBelfast, United Kingdom
- Birmingham Women's and Children's NHS Foundation TrustCity onlyBirmingham, United Kingdom
- University Hospitals Bristol and Weston NHS Foundation TrustUnverifiedBristol, United Kingdom
- Cardiff & Vale University LhbUnverifiedCardiff, United Kingdom
- LothianUnverifiedCity of Edinburgh, United Kingdom
- Gartnavel Royal HospitalUnverifiedGlasgow, United Kingdom
- Great Ormond Street Hospital for Children NHS Foundation TrustUnverifiedLondon, United Kingdom
- St James University Hospital NHS TrustUnverifiedLeeds, United Kingdom
- Leicester Royal InfirmaryUnverifiedLeicester, United Kingdom
Common questions
What kind of cancer can join this study?
This study is for children and young people with solid tumours (including lymphomas) or leukaemia that has returned or isn't responding to treatment.
Will I get direct treatment from this study?
No, this is a research study to gather genetic information. Your doctors might use the findings to help guide your treatment, but the study itself doesn't provide treatment.
What samples will I need to give?
Usually, a blood sample and a piece of tumour tissue (for solid tumours) or a bone marrow sample (for leukaemia). These are often collected as part of your normal hospital care.
Will this study find a cure for my child?
This study aims to discover genetic information that could lead to better treatments in the future. The direct benefit to an individual patient is unlikely, but it will help develop new approaches for many patients.
Who is paying for this research?
This study is funded by Cancer Research UK, a leading charity dedicated to beating cancer through research.
How to find out more
Amina Bukhari
Always speak to your GP or specialist before deciding to take part in a study.
Discussion
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