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Everything you need to know about neuroendocrine tumours (NETs)

Learn About NETs

What Are Neuroendocrine Tumours (NETs)? What Causes NETs? Symptoms of NETs How Common Are NETs?

Types of NETs What Will Happen Long Term? Your Care Team Questions to Ask Your Doctor

Diagnosing NETs

Diagnostic Tests Tumour Marker Tests Imaging Methods

Scintigraphy Scans Other Tests For NETs

Treating NETs

How Are NETs Treated? Liver-directed Therapies Carcinoid Symptom Treatments

Side Effects of NETs Treatments Clinical Trials For NETs

Learn how to cope and
live with neuroendocrine tumours (NETs)

Information about the emotional, physical and social challenges of living with NETs.

Coping With Emotions Talking About NETs Gathering Information About NETs Travelling With NETs

NETs and Work Information For Caregivers Keeping Track of Your Medical Care

Practical Tips & Tools

Keeping Healthy Diet and Nutrition Managing Symptoms and Side Effects Hobbies and Interests Preparing for Imaging Scans

Hear from others
with NETs

“It was very hard for me to speak to my children, to say, ‘I have cancer’, because I didn’t know a lot about neuroendocrine cancer.”

Sonia

View Sonia's story

View all patient stories

Supporting you throughout your journey

If you’re living with neuroendocrine tumours (NETs) and you’re looking for clinics in your region and patient support services, then you’ve come to the right place. Search through the Get Support resources listed here to see if any of these can help you.

Frequently Asked Questions (FAQs) Find A NETs Clinic NETs Patient Support Groups

What are you looking for?

Clinical trials for NETs

Although good results can be obtained with surgery, radiotherapy and the medical treatments for neuroendocrine tumours (NETs, which you may also hear referred to as carcinoid tumours, GI-NETs, GEP-NETS, pancreatic NETs and lung NETs) discussed in this section of the website, there is always a need to improve upon the options available to help people live with NETs for as long as possible with the best quality of life, and perhaps one day even cure this type of cancer.

This is why clinical trials investigating new treatment options are constantly being performed, in various areas of medicine.

Living with NETs

Information about the emotional, physical and social challenges of living with NETs

Living With NETs

How are clinical trials performed?

Clinical trials are an important way that new approaches and treatments for NETs and other diseases can be tested to ensure that they not only work well, but also that they can be given to patients safely.

There are four main phases of clinical trials, which usually start by testing an experimental medicine or procedure in a small group of healthy people or patients before seeing if it works in the group of patients it is intended for.

These trials are only conducted after several years of rigorous assessment in the laboratory and in animal studies, and after appropriate approval from regulatory authorities such as the European Medicines Agency in Europe.

Phases of a clinical trial

Phase 1

A small number of people with no health problems are given the experimental medicine or undergo the experimental procedure to check that it is not harmful and could potentially work in people.

Phase 2

A slightly larger group of healthy people, patients, or both are given the medicine. This is to again check the safety of the approach and to find out how much of the experimental medicine is needed to have an effect, or to check that the approach is feasible and works.

Phase 3

This is an important phase of clinical testing as now the medicine or approach is given to a large number of patients with the disease and compared against a placebo (no treatment) or another standard of care. This is to prove that the treatment works and that it would be safe to give to a wider population of patients.

Phase 4

These trials are conducted after a medicine or approach has been approved for use by the regulatory authority of a country. Phase 4 trials look at long-term safety and effectiveness, and gather more information on the benefit and risk, and how to optimise the use of a medicine or approach.

How can I participate in a clinical trial?

People participate in clinical trials for many reasons from simply wanting to help others and contribute to advancing medical knowledge to potentially being able to receive the latest treatment for a disease. Clinical trials are often a way to receive the latest treatments and approaches before they become widely available.

If you would like to participate in a clinical trial, talk to a member of your healthcare team as they will be able to advise you on whether or not you would be able to do so, and if there are trials in your area that you could join.

Your specialist NETs doctor or other member of your multidisciplinary team will also be able to talk you through exactly what would be involved in a clinical trial to make sure you fully understand what would happen if you agreed to participate.

Your national patient support group may also be able to guide you on where clinical trials in NETs are being conducted in your area.

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Treating NETs

This section of the website gives you information about various medical treatments for neuroendocrine tumours (NETs, which includes carcinoid tumours, GI-NETs, GEP-NETS, pancreatic NETs and lung NETs). This is a general list of available treatments.

Please check with your own doctor to find out if a treatment listed on this website is available in your country and also if it is a suitable option for your case.