Supporting the

Neuroendocrine Cancer Community

ncuk campaigns:


Neuroendocrine Cancer UK undertakes in-house research as well as supporting external clinical trials. We recognise the patient voice in research is vital. This voice is a hugely underused expertise in research and we thank everyone who has contributed to any of the research that we have undertaken or supported. Advocacy groups are working globally to increase the patient contribution in research.

Worked planned for 2022 is:

  • Launch of FIND The Gap Campaign. This campaign will be the overarching name of our research work. FIND the Gap will identify the unmet needs (clinical, physical, informational and psychosocial) and where funds allow support initiatives from laboratory research to ‘real world experience’ data capture which we hope will fill the gaps in knowledge, healthcare provision and policy making
  • An updated survey of patient need and perceptions of priorities in Neuroendocrine Cancer research
  • Development of an NCUK dedicated national patient and public involvement group
  • Development of a FIND The Gap Fundraising Committee.

Why Research? A study of UK national Public Health records showed that Neuroendocrine cancers were three times more likely to be diagnosed at stage IV than other cancer types. Consequently, the advanced stage of cancer at diagnosis resulted in significantly poorer outcomes of some Neuroendocrine cancers compared with other cancer types at the same anatomical site. Serial late diagnosis is just one reason as to why there needs to be increased research and awareness of Neuroendocrine cancers.

According to Cancer Research UK, diagnosing cancer before it has the chance to spread too far means that treatment is more likely to be successful, for example, in England, more than 9 in 10 bowel cancer patients survive the disease for 5 years or more, if diagnosed at the earliest stage’.

If you are interested in being involved or think you can help please contact: