NET Patient Foundation shared some of their data collection project within the UKINETs community in December 2017 illustrating the increase in incidence of NETs throughout the UK.
Historically the incidence and prevalence of neuroendocrine tumours (NETs) has been difficult to establish due to issues with disease coding and data collection. Studies by Ellis et al in 2006 estimated the incidence of gastroenteropancreatic neuroendocrine tumours (GEP NETs) to be 1.3 per 100,000 per year (incidence hereafter given as cases per 100,000). However, the SEER USA data suggests a four-fold higher incidence, and prevalence of 35 per 100,000. This study aimed to identify the incidence and prevalence of NETs over a ten-year period utilising the Public Health England (PHE) population-based cancer registry. This study has clearly demonstrated that incidence of NETs in England is significantly higher than previously reported. The data demonstrate similar incidence and prevalence rates to those reported in the SEER database. Importantly, it highlights that colorectal and lung NETs are the most common primary sites.

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