NCUK Research Publications

Jun 4, 2012

NET Patient Foundation Research Abstracts

NPF and NCRAS Public Health England partnership project has been compiling statistics on the incidence, prevalence and survival of NET patients in England using English cancer registry data, with an aim to also access Scottish, Welsh and Northern Irish cancer registry data to also get UK wide statistics.

We carried out four pieces of research in 2017, abstracts for which can be found below:

Presenting symptoms and delay in diagnosis of gastrointestinal and pancreatic Neuroendocrine tumours

The aims of this study were to establish pre-diagnosis patterns of symptoms. Secondly, to determine the time from onset of symptoms to NET diagnosis and understand the interaction with primary and secondary healthcare providers.

Ileocolonic neuroendocrine tumours identified in the English bowel cancer screening programme

The aim of this study was to identify and characterize NETs diagnosed within the English BCSP, a double-screen programme that uses guaic faecal occult blood test (gFOBT) screening and colonoscopy, by interrogating the national colorectal screening database and validating the findings with individual BCSP centres.

Self-reported side effects in neuroendocrine tumour (NET) patients prescribed somatostatin analogues – the role for specialist dietitians and nurses

The aims of this study were to:

  • Assess what symptoms/side effects patients report on SSA’s.
  • Assess the severity of symptoms/side effects reported by patients whilst on SSA’s.
  • Produce recommendations on how to deal with symptoms commonly experienced by patients on SSA’s.

This study has been accepted to be published in the British Journal of Nursing.

Recent News

Mental Health Outreach Campaign

Mental Health Outreach Campaign

November 10th was World Neuroendocrine Cancer Day. Assumed rare, Neuroendocrine Cancer is now the 10th most prevalent Cancer in England, with a continually rising incidence - that has already seen a 371% increase since 1995. Despite this increase, low awareness and...

read more
Patient advocacy in action: discussion with Mark McDonnell

Patient advocacy in action: discussion with Mark McDonnell

24th October 2022 Mark McDonnell is Chairperson of the NET Patient Network in Ireland and President of the International Neuroendocrine Cancer Alliance (INCA). Neuroendocrine neoplasms are classified as an orphan disease, meaning they affect a small portion of the...

read more
UK Clinical ‘Trials that Matter’

UK Clinical ‘Trials that Matter’

As many of you will know, Neuroendocrine Cancer UK is a member of INCA (the International Neuroendocrine Cancer Alliance). INCA is the global voice for patients with Neuroendocrine Cancer, with a mission to raise awareness, push for scientific advancements, focus on...

read more