A study to understand more about neuroendocrine tumours

Cancer type:

Neuroendocrine tumour (NET)





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 genes Open a glossary item and gene changes, as well as possible gene faults passed down in families. They hope to find features (biomarkers Open a glossary item) that may help in future with diagnosing and treating NETs and predicting treatment outcomes.

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

Trial design

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.

Hospital visits

You will not need to make any extra hospital visits to take part in this study.

Side effects

As you will not be having any extra medical procedures in this study, you will not have any side effects from taking part.



Recruitment start:

Recruitment end:

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.

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Chief Investigator

Dr Christina Thirlwell

Supported by

Cancer Research UK
Experimental Cancer Medicine Centre (ECMC)
Royal Free London NHS Foundation Trust

Questions about cancer? Contact our information nurses

Freephone 0808 800 4040

Last review date

CRUK internal database number:


Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Charlie took part in a trial to try new treatments

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“I think it’s really important that people keep signing up to these type of trials to push research forward.”

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