How complete and accurate are cancer registrations notified by the National Health Service Central Register for England and Wales?

Abstract

Main results-Cancer diagnoses notified by NHSCR diVered substantially from those determined by this pathology review for 47 of the 688 notified cases reviewed (7%; 95% CI 5%, 9%). Over one third of these discrepancies were attributable to failures in data capture or coding by the cancer registration system and almost half to changes in diagnosis; 26 of the 47 discrepant cases were reclassified as nonmalignant and 21 as malignancies but with a substantially diVerent diagnosis. The 694 confirmed malignancies represented 94% (95%CI 92%, 95%) of the 740 cancers ascertained from all sources. Conclusions-It is estimated that the cancer registration system missed at least 10% (95%CI 6%, 15%) of all incident cases of malignant disease. Without additional ascertainment from multiple sources and diagnostic review, it would be incautious to use NHSCR cancer registrations as the sole basis of an epidemiological study.

The influence of anti-TNF therapy upon incidence of keratinocyte skin cancer in patients with rheumatoid arthritis: longitudinal results from the British Society for Rheumatology Biologics Register

“…Patients completed a Stanford health assessment questionnaire (HAQ)17 to indicate their level of physical disability. Previous malignancies, including skin cancers, were reported directly by the National Health Service Information Centre (NHS–IC) who link with the Office for National Statistics, which has been shown to register 90% of malignancies diagnosed in the UK accurately 18. Registration of skin cancer is less complete as the UK Association of Cancer Registries suggests that only the first BCC or SCC per patient should be recorded 19…”

Risk of Mortality and Cancer Incidence in Barrett's Esophagus

“…The completeness of this data set has previously been questioned, with estimates proposing that up to 5% of deaths and 10% of cancers may result in failed notification (34,35). Despite these deficiencies, it is the only service that enables the provision of death and cancer events in a prospective manner and one may expect the proportion and pattern of missed registrations to be similar in both the flagged BE cohort and in the general population.…”

Risk of malignancy in diagnosed coeliac disease: a 24‐year prospective, population‐based, cohort study

“…The meticulous surveillance of the cohort is likely to have identified all of the incident malignancies following the diagnosis of coeliac disease and this is probably more accurate than national registration data which have previously shown an approximate 10% underestimation of cancer rates. 13 If at all, these factors may have led to a slight overestimation of the relative cancer rates. Our use of national cancer registration data to estimate the general population rate of malignancy is routine in studies of this type.…”