Abstract
In Britain the National Health Service Central Registers (NHSCRs) provide the facility for a study population to be 'flagged', initiating a system of notification to investigators of deaths and cancers that occur in the population. This system of notification is an invaluable resource for epidemiological research. A comment on its efficiency is provided here by a comparison of the system with an independently ascertained series of breast cancers. Fifty verified breast cancer cases were identified during a study of a flagged cohort of British women taking hormone replacement therapy. At the time of analysis (May 1985), some 2.5 years after diagnosis of the most recent case, twenty-eight of the 50 cases had not been notified to the investigators by the NHSCRs. Of these, fourteen had not been registered. Eight had been duly registered, but had not yet been recorded at the NHSCRs. Five of the remaining six cases were in the process of being notified. The implications of these findings for cancer researchers are discussed. The potential for omission and delay between the diagnosis of cancers in a flagged population and their notification to the investigators must be taken into account, if underestimation of the true level of cancer risk is to be avoided.
Highlights
We report here the results of an opportunistic study of the reliability of notification from the National Health Service Central Registers (NHSCRs) of breast cancers in a cohort of long-term users of hormone replacement therapy (HRT)
One woman's record had not been traced for flagging at the NHSCR, and her cancer, though registered at OPCS, could not have been notified to us in any case*
Of the remaining 27 cases, five were already being processed at the NHSCRs in May 1985, and were immediately notified to us in direct response to our query: they would presumably have been included in the quarterly mailing from the NHSCRs
Summary
The main study population from which the cases in this report are derived is a cohort of 4544 women who have taken HRT, and in whom mortality and cancer incidence are being monitored. These women were recruited from specialist menopause clinics around Britain and had taken at least one year's continuous therapy at the time of recruitment. We were able to ascertain how many of the breast cancers identified either through the clinics or from the questionnaire had not been identified by notification from the NHSCR ('unnotified' cases). For each 'unnotified' case an attempt was made to trace the cancer through the GPs, hospitals, cancer registries, OPCS and the NHSCRs to investigate reasons for delay or failure of the system
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