"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A study looking at improving treatment for children with kidney cancer (UMBRELLA)
This study will collect information about children with kidney (renal) cancers, including Wilms tumour, to help with decisions about treatment in the future. This study was originally called IMPORT (Improving Population Outcomes for Renal Tumours of childhood).
More about this trial
This study is for children, teenagers and young adults. We use the term 'you' in this summary, but of course if you are a parent, we are referring to your child.
The research team will collect information about:
- scan results
- the type of cancer
- blood samples
- urine samples
- cancer cells
- how well treatments work for different people
They will collect information about people with Wilms tumour, the most common form of kidney cancer in children and young people. But will also include other types of kidney cancer such as renal cell cancer, clear cell cancer or rhabdoid cancer.
They will remove any details that would mean people taking part can be identified. They will then put the rest of the information into a centralised computer programme.
They hope that storing all the information together will make it easier to find out more about why some people get kidney cancer, and how best to treat it.
Being part of this study won’t affect the treatment you have - you will have the standard treatment for your cancer. You won’t have any direct benefit from taking part in this study, but it might help doctors decide how to treat children with kidney cancer in the future.
In 2019 this study changed from a UK study called IMPORT to an international study called UMBRELLA. The research team hope that they can learn even more if they work with other teams from around the world.
The main aim of this study is to increase knowledge and improve treatment for children with kidney cancer.
Who can enter
You may be able to enter this study if all of the following apply. You:
- are a child, teenager or young adult with kidney cancer
- have been diagnosed or treated at one of the Principal Treatment Centres (PTC) for childhood cancer in the UK
- agree that the research team can use samples of your cancer, blood and urine as well as information collected throughout your treatment and follow up as part of the research project
The research team hope that just over 1,000 children with Wilms tumour will join this study from a number of countries around the world. Children with other types of kidney cancer can also join the study.
If you join this study you will have the standard treatment for your type of cancer. Experts at the Children’s Cancer and Leukaemia Group (CCLG) have produced guidelines for treating children of all ages with:
- newly diagnosed kidney cancer
- kidney cancer that has spread or come back after treatment
- cancer in both kidneys (bilateral cancer)
The research team will collect information about your diagnosis, scan results, treatment and how well it works. They would also like to look at samples of your cancer, blood and urine for any changes in genetic material (DNA) or proteins. But you don't have to agree to this if you would rather not.
There is a small possibility that the research team will find a change (mutation) in one of your genes that they think caused your kidney cancer. If this happens, they will let your own cancer doctor know so he or she can discuss it with you in more detail.
The researchers will put all the information they gather into one joint computer database. This information will be anonymous - no one will be able to identify you. They hope to use this information to see if changes in genetic material in the cancer cells are important in predicting whose cancer is more likely to come back. This will help with diagnosis and treatment in the future.
You will go to the hospital regularly as part of your treatment for kidney cancer. You won’t have to make any extra trips as part of this study.
The research team will use part of the samples that are taken during your diagnosis or routine treatment. You won’t need to give any extra samples of blood or urine.
There are no treatments or extra tests as part of this study, so there are no direct side effects.
There will be side effects from the treatment you have for kidney cancer. The treatment you have will depend on the type and stage of your cancer, your doctor will tell you more about this.
How to join a clinical trial
Professor K Pritchard-Jones
Cancer Research UK
Children's Cancer and Leukaemia Group (CCLG)
Experimental Cancer Medicine Centre (ECMC)
Great Ormond Street Hospital Children’s Charity
International Society of Paediatric Oncology (SIOP) Renal Tumours Study Group
Little Princess Trust
NIHR Clinical Research Network: Cancer
University College London Great Ormond Street Institute of Child Health