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.