Completeness Of Cancer Registration Research Articles

Socioeconomic position and the risk of brain tumour: a Swedish national population-based cohort study

BackgroundThe aim was to investigate associations between different measures of socioeconomic position (SEP) and incidence of brain tumours (glioma, meningioma and acoustic neuroma) in a nationwide population-based cohort.MethodsWe included 4...

Coverage, Density and Completeness of Sources used in Tehran Metropolitan Area Cancer Registry: According to the Data of Esophageal Cancer, 2003-2007

The completeness of cancer registration is a major validity index of any reported cancer incidence. The present study aimed to evaluate the esophageal cancer incidence registered in the Tehran Metropolitan Area Cancer Registry. The data on esophageal cancer abstracted from three sources of 1) pathology departments, 2) medical records, and 3) death certificates during 2003 till 2007 were utilized. The completeness of the data sources were evaluated using coverage (defined as the proportion of a community population with esophageal cancer identified by the source) and density (defined as the proportion of non-empty fields of the data by source). A total 1,404 cases of esophageal cancer were reported for the duration of the study. Pathology provided 771, medical records 432, and death certificates 609. The coverage was 0.55 for pathology, 0.31 for medical records, and 0.43 for death certificates. The respective density values were 0.82, 0.96 and 0.98, respectively. Pathology (0.45) was the most complete source followed by medical records (0.42), and death certificates (0.29). A low degree of completeness dictates putting more effort into case finding plus abstracting data more thoroughly.

Delay and completeness of cancer registration in a post‐marketing surveillance study of cimetidine

AbstractData collected in a large multicentre post‐marketing surveillance study of cimetidine have been used to assess delay and completeness of cancer registration. With regard to delay, 44% of registrations in Nottingham were received within 2 years of the diagnosis of cancer but only 14% in Oxford and 6% in Portsmouth. By the end of the third year, these figures had become 82%, 62% and 62% respectively. With regard to completeness, in the period 3 to 10 years before the assessment date 9% of Nottingham, 36% of Oxford and 17% of Portsmouth neoplasms were still unregistered. Investigators using National Cancer Registry data for interpretation of their studies should be acquainted with the performance of the individual registries concerned.

Completeness of cancer registration in England and Wales: an assessment based on 2,145 patients with Hodgkin's disease independently registered by the British National Lymphoma Investigation

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.

The completeness of cancer registration in England: an assessment from the Oxford-FPA contraceptive study.

The completeness of cancer registration in England for the period 1968-85 has been assessed in a cohort of 17,000 women who reported malignancies directly to the investigators. Of 325 cancers reported, 281 (86.5%) had been registered by mid-1987. Under-registration varied considerably between regional cancer registries. Eight (18%) of the 44 unregistered cancers were treated in private hospitals. Under-registration also varied considerably with cancer site: only 8% of 150 breast cancers were not registered, and at sites accounting for 79% of all tumours, under-registration was less than 15%; however, 40% of melanomas (20 cases) and 50% of lung cancers (6 cases) were not registered. Of 281 registered tumours, only 219 (78%) were notified to the investigators from the NHSCR at Southport, with a median lag-time of 2.5 years since diagnosis. There has been a tendency for notification of registered cancers to the investigator to become more prompt but less complete.

Cancer registration in the European community.

A survey of population-based cancer registries in the European Community (EC) is reported: 82 (92%) of 89 registries replied. In 3 of the 12 EC countries (Denmark, Netherlands, UK), general cancer registration applies to the entire population; national registration for childhood neoplasms also applies in 3 countries (FRG, Ireland, UK). About 350,000 new cancers were recorded each year during 1982-1985 in the 32% of the EC population which is covered by general registration. It is estimated that during this period about 988,000 new cancers (excluding non-melanoma skin cancer) occurred each year in the 10 EC countries for which incidence data are available. Most registries report 90-95% completeness of cancer registration, but there is evidence of imprecision in these estimates. Risk factors for cancer are recorded in 43 registries, in particular occupation (38), but recording of occupation is often incomplete. The use of international or compatible systems of coding occupation would facilitate screening of cancer registration data for occupational hazards in the European Community. The quality of cancer information in the Community would be greatly improved by the systematic and widespread use of simple methods to estimate completeness of registration and by allowing registries confidential access to death certificates.

Completeness of cancer registration in Denmark 1943-1966 and efficacy of record linkage procedures.

The completeness of registration in the national, population based cancer registry in Denmark was evaluated for the first 23 years (1943-1966) of operation. The registry was linked to a complementary data file on 5674 Danish invasive cervical cancer patients enrolled in an international, clinical follow-up study on the basis of identifying information including name, month and year of birth and date of cervical cancer diagnosis. The cancer register had a deficit of 2.2% (95% confidence interval, 1.8-2.6) cervical cancer patients; this figure is low compared to those of other cancer registers. Some 80% of the identified cases were retrieved by computerized matching alone, and an additional 15% were identified by combining computerized and visual matching procedures. Scrutiny of non-retrieved case records revealed that major errors in the identifiers of the cohort used for linkage were responsible for inability to identify an additional 1.7%. The presents study underlines the importance of meticulously recorded, high quality key identifiers in registers, and linkage of cohorts to establish the presence or absence of disease.

The completeness of cancer registration in follow-up studies--a cautionary note.

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.