NPF Publications

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 paper here
 

 

Widening the NET 

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

Click here to view

NET Patient Foundation 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. 

Click here to view

Delays and Routes to Diagnosis of Neuroendocrine Tumours

Click here to view


Recent Publications in NET Research

Click here to view

NET Patient Foundation 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 (NPF’s CEO), Tara Whyand (Royal Free Hospital) and Philippa Davies (Royal Free Hospital) was recently featured in the British Journal of Nursing. 

Click here to view