[The North Rhine-Westphalia State Cancer Registry-a historical review from 1974-2025]
Andreas Stang1,2, Heike Bertram3, Andres Schützendübel3
1Institut für Medizinische Informatik, Biometrie und Epidemiologie, Universitätsklinikum Essen, Hufelandstr. 55, 45122, Essen, Deutschland. imibe.dir@uk-essen.de.
Abstract:
Cancer registration in North Rhine-Westphalia began in 1974 and celebrated its 50th anniversary in 2024. The aim of this paper is to describe the development phases of cancer registration in North Rhine-Westphalia between 1974 and 2025.Following an international symposium in Düsseldorf in 1973 and with the support of the Society for the Fight Against Cancer (later: Cancer Society of North Rhine-Westphalia), a cancer registry was established in 1974 under the leadership of Prof. Ekkehard Grundmann, initially focusing on oncological aftercare in Münster. Pathologists who had no contact with patients were not able to report to the registry. Federal political debates between 1978 and 1981 promoted the establishment of cancer centers and cancer registries. The Cancer Registry Act of North Rhine-Westphalia of 1985 created the legal basis for epidemiological cancer registration in the administrative district of Münster. Pathologists were still unable to report to the registry. It was not until the establishment of an electronic procedure for transmitting pathology reports using control numbers in the early 2000s that pathologists were able to report directly to the registry. Only then was it possible to achieve the required completeness of registration of 95%.In 2005, an amendment to the law led to the comprehensive expansion of cancer registration in North Rhine-Westphalia. Since then, reports could only be submitted electronically. The Cancer Early Detection and Registration Act (KFRG) of 2013 led to the amendment of the Cancer Registry Act in North Rhine-Westphalia in 2016. Since then, the cancer registry has been an epidemiological and clinical cancer registry. The cancer registry currently covers a population of 18 million people and registers 173,000 new cases of cancer per year (including non-melanotic skin cancer).
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