"I am glad that taking part in a trial might help others on their own cancer journey.”
A study to understand more about neuroendocrine tumours
This study is looking at genes in people with a neuroendocrine tumour to see if the information they collect can one day help improve treatment for these conditions. This study is supported by Cancer Research UK.
Neuroendocrine tumours (NETs) are rare tumours that develop in cells of the neuroendocrine system. The neuroendocrine system is made up of nerve and gland cells. It makes hormones, which control how our bodies work, and releases them into the bloodstream. NETs may be non cancerous (benign) or cancerous (malignant).
Doctors would like to be able to improve treatment and outcome for NETs. To do this, they need to better understand how these tumours are made up, and how their growth is controlled. But this has been difficult so far because NETs are rare and it has not always been possible to collect fresh samples of these tumours to study.
Researchers in this study will collect blood, urine and fresh tissue samples from people with a NET. They will study
You will not have any direct benefit from taking part in this study. But the results of the study will be used to help people with a NET in the future.
Who can enter
You may be able to enter this study if
- You are being cared for by doctors at the Royal Free or University College Hospitals in London
- Your doctor thinks that you may have a neuroendocrine tumour (NET)
- You are due to have some tissue removed either with a biopsy or surgery
- You are at least 18 years of age
Everyone taking part in the study will give a urine sample and a blood sample (about 4 teaspoons). And, give the research team permission to store and test any tissue left over from your biopsy or surgery.
You may also fill out a short questionnaire. The team will use the information you give to see if there is a link between genes, the environment and how your tumour is made up.
They will treat all of your information anonymously, so no one else will be able to link any results to you.
If the team find out anything from the study tests that may affect your medical care, they will tell you when you come to clinic. If the information is related to gene changes passed down in families (inherited), you will be able to talk to a specialist doctor and counsellor about what this might mean.
You will not need to make any extra hospital visits to take part in this study.
As you will not be having any extra medical procedures in this study, you will not have any side effects from taking part.
How to join a clinical trial
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Dr Christina Thirlwell
Cancer Research UK
Experimental Cancer Medicine Centre (ECMC)
Royal Free London NHS Foundation Trust