Supporting the

Neuroendocrine Cancer Community

Research and Real World Experience

Neuroendocrine Cancer UK undertakes in-house research as well as supporting external clinical trials and real-world experience investigation. We encourage and support research that leads to :

  • An improved understanding of the needs of the patient community with regard to research
  • An improved understanding of the research landscape in the UK
  • An improved understanding as to whether or not current research is in line with patient expectation
  • An improved inclusion of patients in study design and participation in research
  • Encouraging researchers to focus on projects with greater impact on patient benefit

This report is focused on improving outcomes for patients with Neuroendocrine Cancer in England –it responds to the National Cancer Plan and puts forward 4 significant recommendations to be incorporated into National cancer care planning to redress inequalities experienced by those with a rare or uncommon cancer.

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INCA unmet needs survey

Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals

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Annals of Oncology:

Findings from a new specialist remote counselling service for Neuroendocrine Neoplasm (NEN) patients and family members (Bouvier & Winter)

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Delays and Routes to Diagnosis of Neuroendocrine Tumours

R Basuroy, C Bouvier, J Ramage, M Sissons and R Srirajaskanthan BMC Cancer (2018)18:1122

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Survey of Challenges in Access to Diagnostics and Treatment for NET Patients (SCAN)

SCAN was launched worldwide on September 16th, 2019. The survey concluded on November 30th after 2 months and a half fieldwork.

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The Importance of Nutritional Assessment in Neuroendocrine Cancer

Nutritional and vitamin status in patients with neuroendocrine neoplasms Clement et al World J Gastroenterol 2019 March 14; 25(10): 1171-1184

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British Journal of Cancer publishes first in-depth epidemiological characterisation of Neuroendocrine Tumours in the UK

British Journal of Cancer publishes NET Patient Foundation’s research into impact of neuroendocrine morphology on cancer outcome and stage at diagnosis Neuroendocrine Cancer UK (formerly NET Patient Foundation) in collaboration with Public Health England have undertaken the first in-depth epidemiological characterisation of Neuroendocrine Tumours in the UK to identify areas of unmet need with an aim to inform service improvement.

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Widening the Net

This report is focused on improving outcomes for patients with Neuroendocrine Cancer in Scotland it outlines ‘ambitions’ and ‘actions’ to ensure that progress continues to be made in Scottish NET care.

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Neuroendocrine Cancer UK Audit of NHS Trusts in England

The audit carried out by researchers from Quality Health, on behalf of NPF, was to seek information about the delivery of Neuroendocrine Cancer services in Trusts across England.

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Neuroendocrine Cancer UK and Royal Free Hospital publication featured in British Journal of Nursing

A publication on the prevalence of self-reported side effects in neuroendocrine tumour patients prescribed somatostatin analogues written by Catherine Bouvier (NCUK’s CEO), Tara Whyand (Royal Free Hospital) and Philippa Davies (Royal Free Hospital) was recently featured in the British Journal of Nursing.

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For further information about NCUK and research visit our Research page.

Interested in collaborating on a study, survey or research project ? – let us know.

We are particularly interested in hearing from those who share our vision and mission.

About Us

Neuroendocrine Cancer UK is a UK wide charity solely dedicated to providing support and information to those affected by Neuroendocrine Cancer.


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