Abstract
Records of 2,145 cases of Hodgkin's disease in England and Wales treated by the British National Lymphoma Investigation during 1970-84 were sought in the national and regional cancer registers. One thousand eight hundred and eight-six (88%) were recorded in the national register, either as Hodgkin's disease (86%) or as other or unspecified lymphoma (2%) and 2 (0.1%) were recorded as other cancers. A further 69 (3%) cases were registered by regional cancer registries but had not reached the national register. Adjusting for the distribution of the study cases by region of incidence, we estimate completeness of registration of cases of Hodgkin's disease in the national register at 89.7%, and in the regional registers overall at 92.9%. Completeness did not vary appreciably by age or sex or calendar period. There was however, substantial variation in completeness between regional registries. Estimates were made for all regions except North Western; the lowest estimated completeness were under 90% in Wessex, and the Thames registry regions, and the greatest were 95% or more in Northern, Trent, East Anglia, Oxford, South Western, West Midlands and Mersey. Because these results are confined to one malignancy treated by a particular collaborative network of physicians (although a large and widespread one), and because the patients are restricted to those seen in hospitals, caution must be exercised in extrapolation of the findings to cancer registration generally, but other studies and sources of information lead to similar conclusions about completeness of cancer registration nationally and regionally.
Highlights
We extracted from the files of the British National Lymphoma Investigation (BNLI), identifying data on all patients with Hodgkin's disease incident since 1971 and included in their study files
These cases were checked against lists of Hodgkin's disease registrations in the national cancer registry for the year of incidence recorded by the BNLI, and for the adjacent incidence years
To check for this possibility, details of the BNLI patients who could not be found in the national cancer registry were sent to the National Health Service Central Register (NHSCR)
Summary
We extracted from the files of the BNLI, identifying data on all patients with Hodgkin's disease incident since 1971 and included in their study files. These cases were checked against lists of Hodgkin's disease registrations in the national cancer registry for the year of incidence recorded by the BNLI, and for the adjacent incidence years. The cases might have been registered in these other years and sites, either because of error or because of differences in data sources between the BNLI and the national cancer registry To check for this possibility, details of the BNLI patients who could not be found in the national cancer registry were sent to the National Health Service Central Register (NHSCR). An attempt was made to trace the patient on the NHSCR, and if the patient could be identified there a check was made of whether a cancer registration was recorded against the individual's name, and this registration was examined
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