Identifying Research Priorities in Neuroendocrine Cancer

This is a survey for people affected by neuroendocrine cancer, their loved ones, carers and health care professionals. The objective of the James Lind Alliance Priority Setting Partnership is to identify and prioritize the unanswered questions (evidence uncertainties) about the effects of treatments and care, ensuring that health research funding is directed toward what matters most to patients, carers, and clinicians.

In our first survey, over 1,000 questions were submitted. These responses have been carefully reviewed and summarised by health care professionals and persons with lived experience of Neuroendocrine Cancer into 40 key unanswered questions for research.

We now need your help to prioritise the Top 10 questions that should guide future research in this field.

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.