J Epidemiol Community Health 2001;55:414-422 ( June )

Theory and methods

How complete and accurate are cancer registrations notified by the National Health Service Central Register for England and Wales? H O Dickinson^a, J A Salotti^a, P J Birch^b, M M Reid^c, A Malcolm^d, L Parker^a

^a Department of Child Health, University of Newcastle, Royal Victoria Infirmary, Queen Victoria Road, Newcastle upon Tyne NE1 4LP, UK, ^b Department of Histopathology, North Tyneside General Hospital, North Shields, ^c Department of Haematology, Royal Victoria Infirmary, Newcastle upon Tyne, ^d Department of Histopathology, Royal Victoria Infirmary

Correspondence to: Dr Dickinson (heather.dickinson{at}ncl.ac.uk)

Accepted for publication 14 January 2001

STUDY OBJECTIVETo assess the completeness and accuracy of notification of cancers by the National Health Service Central Register (NHSCR) for England and Wales.
DESIGNComparison of 720 cancer registrations ascertained from NHSCR up to May 1999 with those ascertained for the same cohort from six other sources and a pathology review of the NHSCR cancer registrations.
PARTICIPANTSPeople born in Cumbria, north west England, 1950-89, and diagnosed with cancer throughout the UK, 1971-1989.
MAIN RESULTSCancer diagnoses notified by NHSCR differed 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 non-malignant and 21 as malignancies but with a substantially different diagnosis. The 694 confirmed malignancies represented 94% (95%CI 92%, 95%) of the 740 cancers ascertained from all sources.
CONCLUSIONSIt 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.


Keywords: cancer registration; audit; completeness

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© 2001 by Journal of Epidemiology and Community Health
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