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NET Patient Foundation-UK Data Project 2017

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NET Patient Foundation-UK Data Project 2017

Due to a lack of ICD-10 codes for neuroendocrine cancers, it has been difficult for NET Patient Foundation – UK, INCA member organization, to extract data about NET patients from the NHS cancer registry.

It is crucial that we are able to obtain data about NET cancers from the cancer registry in order to be able to better understand the pathway of NET patients and identify unmet needs (e.g. better diagnosis and access to treatments and specialist care). Therefore NET Patient Foundation put together an advisory board of NET specialists, pathologists and Public Health England representatives, and has produced a complete list of codes for all NET types. Then we employed a dedicated cancer analyst to work on the project. We have carried out a Quality Control audit comparing NET data from a dataset from one NET specialist centre, and are working on other major centres to the registry. If data are missing from the registry, reasons for the absence or miscoding will be assessed.

With the new codes we can now interrogate NHS data to provide statistics relating to neuroendocrine cancers in England in 2015, and to compare these data to equivalent data sets in Scotland, Wales and NI, to include for example:
• incidence
• prevalence
• mortality
• 1 year/ 5 year/ 10 year survival rates
• time to diagnosis
• referral pathways and ‘heatspots’

Alongside this basic data we will also examine various other datasets, for example, cardio data and second primary tumour data.

Publication of results is planned for December 2017- March 2018.

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