Identifying Research Priorities in Neuroendocrine Cancer Survey

This is a survey for people affected by neuroendocrine cancer, their loved ones, carers and health professionals. It is a survey to discover what the most important research questions are for neuroendocrine cancer going forwards.

The survey is part of the Priority Setting Partnership work Neuroendocrine Cancer UK and UKINETS are doing with the James Lind Alliance to discover the top ten research priorities for neuroendocrine cancer.

If you are supporting someone with neuroendocrine cancer to complete the survey, you can also complete the survey again on your own behalf. You may need to access the survey using a different browser to enable you to complete it a second time.

Neuroendocrine Cancer

Each year in the UK, around 6,000 people are diagnosed with a neuroendocrine cancer. It can occur in people of any age or gender and can develop in many places throughout the body, but what exactly is neuroendocrine cancer?

Neuroendocrine cancers arise from cells in the neuroendocrine system, which comprises hormone-producing cells found throughout the body. These cancers typically develop slowly and can originate in various organs, such as the gastrointestinal system (60%) and the lungs (20-30%).

You might also hear them called neuroendocrine neoplasms (NENs) or carcinoid tumours.

There are 2 key groups of neuroendocrine cancer:
• neuroendocrine tumours (NETs)
• neuroendocrine carcinomas (NECs)

NETs and NECs are very different. So it is important to know which one you have. Talk to your doctor or specialist nurse if you are not sure.