[The importance of the common cancer registry for the identification of cancer cases in the EPIC Potsdam-study -- results of the first record linkage].
Gesundheitswesen (Bundesverband der Arzte des Offentlichen Gesundheitsdienstes (Germany)) 2004 ; 66: 475-81.
DOI : 10.1055/s-2004-813355
PubMed ID : 15372347
The follow-up of the European Prospective Investigation into Cancer and Nutrition (EPIC)-Potsdam study has been identifying cancer diagnoses by an active follow-up through participant's self-report which is then confirmed by pathology registries or medical doctors. To utilise another source of information, a record linkage was performed with the Common Cancer Registry (CCR) of the states of Berlin, Brandenburg, Mecklenburg-Western Pomerania, Saxony-Anhalt and of the free states Saxony and Thuringia in November 2001, using the EPIC-Potsdam database of compliant study participants at that point in time (n = 27 087). This methodological study compares data of identified cancer cases in the EPIC-Potsdam study with those generated through the record linkage.
The GKR identified 1468 study participants of the EPIC-Potsdam study. Cases (n = 108) with non-melanoma skin cancer were excluded. A separate analysis was done for prevalent (date of cancer diagnosis before baseline examination) and incident cancers (date of diagnosis after baseline examination). We examined how many subjects with at least one cancer were known to EPIC-Potsdam and the CCR, how many had been known only to the CCR and how many only to the EPIC-Potsdam study. Of incident cancer cases each diagnosis was counted. It was analyzed whether the diagnoses as they had been collected by EPIC-Potsdam were identified by the record linkage. Focus was on the diagnoses that had been unknown in EPIC-Potsdam before. The concordance of information from both sources was also considered.
According to the record linkage, 1298 subjects with at least one prevalent cancer were identified in the EPIC-Potsdam cohort, 593 (46 %) of whom were identified in both data sources, 241 (19 %) were newly identified, and 464 (36 %) participants self-reported at least one prevalent tumour which was not identified through the record linkage. Seven tumours were diagnosed before 1961 (the CCR's computerised data are only available since 1961). Fifty-seven percent (n = 187) of all tumours which could not be identified in the cancer registry dated from 1990 - 1995. After completion of the record linkage a total of 582 medically verified incident cancer cases were identified. These comprised 397 medically verified cases that were identified in the EPIC-cohort study prior to the record linkage, 18 self-reported cases where the medical verification was pending, and 167 newly identified cases. Eighty-five of the latter cases have not been identified by other sources in the two following years after record linkage indicating that 15 % of the medically verified cases have been found solely through the linkage.
The EPIC-Potsdam study had a significant benefit of the record linkage due to both the additional identification and verification of prevalent and incident cancer cases, as well as a timely advanced identification of incident diagnoses. The record linkage with the cancer registry improved the quality of the endpoint data of the EPIC-Potsdam study.