Neuroendocrine Tumours in the UK

Dec 19, 2019

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 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.

The research article entitled “Impact of neuroendocrine morphology on cancer outcomes and stage at diagnosis: a UK nationwide cohort study 2013–2015”, published in the British Journal of Cancer, revealed a higher incidence than previously thought at 8.7 new diagnoses per 100,000 population in the UK in 2015.

Prof. John Ramage, Consultant Physician at King’s College Hospital, said: “The paper by Genus et al. is the first systematic epidemiological study of Neuroendocrine Tumours in UK using registry data from Public Health England and the relevant registries in devolved nations. The data shows a higher incidence than previously thought. Other analyses also demonstrated that the number of people living in England in 2015 with a diagnosis of Neuroendocrine Tumours during the preceding 21 years is higher than many other cancers considered to be ‘common’ (prevalence of 35 cases per 100,000).”

“The data shows that the appearance of the tumour seen on pathology and the histological grade (aggressiveness of the cells) were strongly related to survival. Higher stage (spread of tumour) at diagnosis was related to poorer survival. Many cases were diagnosed at a late stage which indicates a delay in diagnosis. This fits with previous data on historical recall studies from existing patients. Further analysis is under way to refine the data and define more factors influencing survival.”

Catherine Bouvier, Chief Executive at NET Patient Foundation, said: “This collaborative project with Public Health England was able to successfully capitalise on recent changes to the coding system for Neuroendocrine Tumours, enabling analysis on this population for the first time. We are delighted to be able to publish this work to highlight the efforts needed to drive an earlier diagnosis for our patient community, to push for specialised service commissioning for this unique group of cancers and to raise awareness of the need to capture data for all rare and less common cancers.”

We would like to thank Public Health England, especially the work and dedication from Tracey Genus and Dr Kwok Wong, and our medical steering committee, led by Prof. Ramage.

read full article here

Recent News

NET Patient Foundation Attends The INCA Global NET Patient Summit

Jun 27, 2019

This years summit was a collaboration of 26 member organisations from 22 countries, with a single goal to work on key strategic pillars that will promote effective, fair and equal care for all patients across the globe. There are various committees within INCA which...

NET Patient Foundation Attends The British Society of Gastroenterology Annual Conference

Jun 27, 2019

"You go through the stages… denial, anger, through to grief for the life that will never be the same once diagnosed with a NET to a ‘kind of’ acceptance but underneath is terror, pure terror. And the more this is recognised, acknowledged and treated, the better...

Charity Golf Day in memory of Andy Cripps raises over £2,000

Jun 25, 2019

Andy Cripps passed away in January 2011, aged just 48, after a late diagnosis of a poorly differentiated neuroendocrine tumour - just a few weeks after diagnosis, after being wrongly treated for backache, sciatica and similar symptoms for six months prior. His sudden...

« Older Entries

Next Entries »