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The founding of a cancer registry in a developing country
Abstract:
The Netherlands Antilles is among the less developed countries lacking data on incidence and distribution of cancer. Therefore, a retrospective case-finding survey was started in 1977 to retrieve all cases of cancer occurring in the period 1968-1977, simultaneously initiating a regular continuous registry for newly occurring cancers. The survey consisted of five phases, designed to ferret out cases from pathology and hospital files, out-patient files, and other sources, and to systematically check the validity of compiled data. The design was based on the absence of specific files of coded diagnoses, the active participation of a pathologist in the search for cases, and the central position of the Pathology Department and the St Elisabeth Hospital. The survey eventually covered a population of 180 000. The work was done in spare time, due to lack of funds, and was yet completed in 2 years. The total cost was 20 specialist-hours and 50 clerk-hours per 100 000 population per year to be covered. The recovery was complete for the 5 most recent years and 85% for earlier years. As to the latter, the main reason for incompleteness appeared to be the deficiency in filing records in out-patient departments. It is concluded that the retrospective active case-finding survey is highly feasible, rapid and cheap, and it is proposed as an alternative to the regular continuous cancer registry, for countries with limited facilities and funds, or when the rapid availability of incidence data is required. Conditions prevailing in developing countries, and with a possible impact on the outcome of the survey, are amply discussed.