THE CALIFORNIA TUMOR REGISTRY—A Summary Report on the Cancer Experience in 36 Hospitals

The California Tumor Registry was started in 1947. It consists of case abstracts of medical records on neoplasm patients seen in 40 hospitals in California and now contains data on more than 159,000 cases, with 15,000 new cases being added each year. Follow-up reports are requested annually on each case not known to be dead.The Registry is designed to (1) promote the continuing care of the patient, (2) to evaluate cancer control methods, (3) to advance knowledge of the epidemiology of cancer, and (4) to suggest leads for laboratory and clinical research.From a series of 110,628 neoplasm cases reported to the California Tumor Registry in 1942-1954, data are presented on 76,499 cancer cases initially diagnosed in reporting hospitals. Histopathologic confirmation, age, sex, stage, treatment, follow-up, and survival of cancer patients are discussed. Use of the Registry information for analyzing cancer experience for epidemiological study and for evaluation of treatment methods are also described.The report is intended to illustrate the types of data that can be obtained from the California Tumor Registry. More comprehensive reports on specific aspects of cancer control will be forthcoming.     

Earlier Diagnosis of Cervical Cancer—An Analysis of Reports to the California Tumor Registry from 1942 to 1963

The mortality rate for cervical cancer in California declined during the period 1950-64. Indirect evidence shows that the incidence is also declining, but it is difficult to assess this decline because of the effect of the increasing use of cytologic examination on incidence rates for cervical cancer.Cervical cancer, in the 57 hospitals reporting to the California Tumor Registry, is being diagnosed at an earlier stage than in previous years. The proportion of cases diagnosed with the lesion still in the in situ stage rose from zero in 1942 to 56 per cent in 1963, and invasive cervical cancer, as a proportion of all invasive cancer in women, decreased from 15 per cent to 9 per cent. There is wide variation among hospitals in the proportion of cervical cancer cases that are in situ at time of diagnosis.     

The California tumor registry

The California Tumor Registry, in which 71,215 cases have been entered, provides data for professional and public education which is specific to the state. It has suggested leads for epidemiological investigation of cancer. Participating agencies are assisted in maintaining adequate follow-up systems through annual listing of cases by the State Department of Public Health and removal from the list of cases in which death occurs. Among the first cases analyzed, the diagnosis was confirmed microscopically in 70.6 per cent. Only 36.2 per cent of patients had visited a physician within two months after onset of symptoms. Survival of patients with cancer is compared with their expectancy calculated from life-tables, thus taking account of deaths from causes other than cancer.     

THE CALIFORNIA TUMOR REGISTRY

The California Tumor Registry, in which 71,215 cases have been entered, provides data for professional and public education which is specific to the state. It has suggested leads for epidemiological investigation of cancer. Participating agencies are assisted in maintaining adequate follow-up systems through annual listing of cases by the State Department of Public Health and removal from the list of cases in which death occurs. Among the first cases analyzed, the diagnosis was confirmed microscopically in 70.6 per cent. Only 36.2 per cent of patients had visited a physician within two months after onset of symptoms. Survival of patients with cancer is compared with their expectancy calculated from life-tables, thus taking account of deaths from causes other than cancer.     

The first fifty years of the Connecticut Tumor Registry: reminiscences and prospects

The first fifty years of the Connecticut Tumor Registry (1935-1985) have seen unprecedented progress in the collection of standardized data on cancer patients and in the processing of these data, from paper documents to punch cards and magnetic tapes. The need for collecting such information was first recognized, in the early 1930s, by a group of physicians, health professionals, and laymen in New Haven who observed alarming increases in cancer rates and poor survival of cancer patients in this city. This paper recalls the growth and development of the registry and the role played by the Connecticut legislature, the State Medical Society, the Connecticut Department of Health, and the National Cancer Institute in this process. For half a century, the registry has provided assistance to practitioners, hospitals, and research scientists, not only in Connecticut but across the country and around the world. By making available reliable data on incidence and survival, the registry has played a key role in patient management, clinical trials, and etiologic studies. It has also demonstrated the value and served as an exemplary model of a population-based registry. At this juncture in its history, prospects for the future of the Connecticut Tumor Registry appear bright. Its data base will be an essential resource for the recently established Cancer Control Research Unit (CCRU) in the state and for new intervention studies by investigators at Yale, the University of Connecticut, and the State Health Department.     

Improving case ascertainment of a population-based birth defects registry in New York State using hospital discharge data

BACKGROUND: The assessment of the data quality of population-based registration systems is essential to understanding the reliability and usefulness of disease surveillance and research findings resulting from the use of registry data. Since the New York State Congenital Malformations Registry (CMR) uses passive case ascertainment, the completeness of the registry data is an important aspect of the quality of information. This paper presents the results of hospital audits, which were conducted to capture the unreported cases using hospital discharge files, and evaluates the effectiveness of the audits. METHODS: Children age 2 years or younger and diagnosed with reportable birth defects for the birth years 1998-2000 were selected from hospital discharge files of all reporting hospitals in the New York Statewide Planning and Research Cooperative System (SPARCS) and matched to the CMR database for the same birth year period.The unmatched reports from the SPARCS hospital discharge files that the CMR possibly missed were sent to hospitals, requesting submission of the missed reports. Two audits on all reporting hospitals in New York State were conducted: 1) 1998 and 1999 birth cohorts audited from June 2000 to March 2002, and 2) 2000 birth cohort audited from November 2001 to November 2002. RESULTS: Hospital audits using SPARCS hospital discharge data identified 5,460 reports that the CMR missed for the selected 66 hospitals analyzed. About 86% of these reports had reportable conditions and were added to the CMR, which comprised 21.4% of all reports from the 66 hospitals for the birth years 1998-2000. The number of reports that would have been missed without audits decreased from the 1998 and 1999 birth cohort (25.1%) to the 2000 birth cohort (13.9%). Low reporting rates and, thus, a high percent of added reports, were found for hospitals with a relatively small number of annual reports and for some specific birth defects such as chromosomal anomalies, anencephalus and congenital anomalies of the urinary system. CONCLUSION: The current study demonstrates that using hospital discharge data to improve case ascertainment is a valuable and effective method of enhancing birth defect surveillance, particularly for those hospitals with low reporting rates.     

Problems in determining the incidence of cervical cancer.

Since cancer registries have different recording practices, the incidence rates that they report must be compared with caution. Indexes of reliability of recording indicated that in 1971 the reported incidence of cervical cancer in Ontario was too high. In 1971 Ontario used a method of passive reporting of cancer cases: the Ontario Cancer Registry linked hospital reports, death certificates and reports from the Ontario Cancer Treatment and Research Foundation''s treatment centres to produce a single record for each case. Pathological confirmation was requested for cases thus recorded by the registry. In 26% of cases a diagnosis other than cervical cancer was indicated. With these cases omitted, the incidence rate became 15.1/100 000, as opposed to the 20.5/100 000 reported by the registry.     

Exposure to chemotherapeutic agents and the risk of a second breast cancer: preliminary findings

Chemotherapeutic treatment for cancer has been successful in prolonging survival but may also lead to the development of second cancers. Two case-control studies presented here suggest, however, that breast cancer patients who receive chemotherapy are at significantly lower risk of a contralateral breast cancer than those who do not. Approximately 300 incident cases of contralateral breast cancer and 300 randomly chosen surviving controls with unilateral breast cancer were identified through the Connecticut Tumor Registry for inclusion in each study. The initial study was based on review of medical records at eight hospitals and indicated that the overall association with chemotherapy was modified by body build. The second study obtained information from in-person interviews, hospital records, and outpatient chemotherapy records from across the state. The preliminary results of this second study confirm the previous findings. Both cytotoxic and hormonal drugs were associated with a reduction in the risk of second breast cancers (OR = 0.5, 95 percent CI: 0.3-1.0; OR = 0.5, 95 percent CI: 0.2-1.2, respectively). Significant interaction with body build was observed for hormonal treatment (ratio of ORs = 5.8, 95 percent CI: 1.0-34.3 for a five-unit change in Quetelet's index), with a nonsignificant but detrimental effect suggested for overweight women (OR = 2.3, 95 percent CI: 0.4-13.9 for a Quetelet's score of 35).     

The Epidemiology of Cancer in Animals

The principles of epidemiology are applicable to the study of the distribution and determinants of cancer in both human and animal populations. There are many examples of epidemiologic factors (host, environment, agent and time) related to cancer in animals. Certain host characteristics such as age, sex and breed are related to risk of developing cancer. Some environmental influences are illustrated by differences in the geographical distribution of certain types of animal cancer.Aggregations of cancer cases have been reported in herds, families and households. However, the usual distribution of cases in a population does not resemble epidemics typical of infectious diseases. Several factors (radiological, chemical, dietary, parasitic, mechanical, genetic and viral) have been identified as influences that affect the development of animal tumors.Animal species that have been domesticated live longer and consequently malignant disease develops in more of them. Cancer incidence rates now available from data compiled by an animal neoplasm registry in Alameda and Contra Costa counties, California, indicate that some of the frequent sites of cancer in man (skin, breast and the hemic and lymphatic systems) are among the most frequent sites in dogs and cats, man''s closest animal associates.     

The role of hospital-based cancer registries in low and middle income countries-The Nigerian Case Study

Background: The incidence of cancer continues to rise all over the world and current projections show that there will be 1.27 million new cases and almost 1 million deaths by 2030. In view of the rising incidence of cancer in sub-Saharan Africa, urgent steps are needed to guide appropriate policy, health sector investment and resource allocation. We posit that hospital based cancer registries (HBCR) are fundamental sources of information on the frequent cancer sites in limited resource regions where population level data is often unavailable. In regions where population based cancer registries are not in existence, HBCR are beneficial for policy and planning. Materials and methods: Nineteen of twenty-one cancer registries in Nigeria met the definition of HBCR, and from these registries, we requested data on cancer cases recorded from January 2009 to December 2010. 16 of the 19 registries (84%) responded. Data on year hospital was established; year cancer registry was established, no. of pathologists and types of oncology services available in each tertiary health facility were shown. Analysis of relative frequency of cancers in each HBCR, the basis of diagnosis recorded in the HBCR and the total number of cases recorded by gender was carried out. Results: The total number of cancers registered in these 11 hospital based cancer registries in 2009 and 2010 was 6484. The number of new cancer cases recorded annually in these hospital based cancer registries on average was 117 cases in males and I77 cases in females. Breast and cervical cancer were the most common cancers seen in women while prostate cancer was the commonest among men seen in these tertiary hospitals. Conclusion: Information provided by HBCR is beneficial and can be utilized for the improvement of cancer care delivery systems in low and middle income countries where there are no population based cancer registries.     

Evaluation of data quality at the Hungarian National Cancer Registry, 2000–2019

BackgroundThe Hungarian National Cancer Registry (HNCR) was legally established as a population-based cancer registry in 1999, and its operation started in 2000 supporting the planning and development of the Hungarian oncology network as well as informing national cancer control policies. Ensuring comparable, accurate, and complete data on malignant and in situ neoplasms is critical in determining the applicability of the database. The aim of this study was to perform a comprehensive evaluation of the data quality at the HNCR.MethodsBased on qualitative and semiquantitative methods from current international guidelines, we assess the comparability, completeness, validity, and timeliness of the collected data over the diagnostic period 2000–2019, with a focus on the year 2018.ResultsCoding practices and the classification system used at the HNCR are based on the International Classification of Diseases (ICD-10), which differs from the internationally recommended ICD-O. The annual trends in incidence did not indicate major fluctuations, that may have resulted from data collection discrepancies, while comparisons of the mortality-to-incidence ratio (M:I) compared with 1 minus 5-year observed survival indicated some systematic differences requiring further exploration. The age-standardized (European standard) incidence rate per 100 000 measured by the HNCR in 2018 was very high: 647.9 for men and 501.6 for women, 11.6% and 14.6% higher than the International Agency for Research on Cancer (IARC) estimates respectively. Behind the overall differences between the two data sources, we identified that the vast majority were due to ill-defined ICD codes: malignant neoplasm of other and ill-defined sites (C76), and malignant neoplasm without specification of site (C80). Otherwise, there were no major discrepancies by localization. The proportion of morphologically verified cancer cases was 57.8% overall, that of death certificates was 2.3%, and that of unknown primary tumors was 1.4%.ConclusionFurther implementations and interventions are required to ensure that the operations, coding practices, and the classification system used at the national registry are in accordance with international standards, and to increase the completeness and validity of the collected cancer data. In particular, the low morphologically verified proportion questions the overall accuracy of the stated diagnoses within the database. Nevertheless, our examination implies that the data of the HNCR are reasonably comparable, and without doubt fulfill the requirements to support national oncology services and cancer planning. However, most importantly, a review of registry personnel and resource requirements to run the national population-based cancer registry should be an essential part of Hungary’s national cancer strategy.     

CONGENITAL SYPHILIS IN CALIFORNIA

Routine serologic tests for syphilis (as required by California law governing prenatal examination) and penicillin therapy during pregnancy for infected mothers have been major factors in the prevention of congenital syphilis in California during the past ten years. In 1940 one of each 822 infants had the disease, as indicated by morbidity reports of congenital syphilis in infants under the age of one year. In 1950 the ratio was one in 8,148. To determine why congenital syphilis continues to occur, a study of the 134 cases reported over a two-year period was made with the cooperation of local health officers and practicing physicians. It showed that in 76 per cent of cases the mother did not consult a physician prior to delivery or reported so late in pregnancy that the infant was born before adequate penicillin therapy could be given. In another 15 per cent syphilis developed in the mother during pregnancy after a negative reaction to a prenatal serologic test. The other 9 per cent of cases were due to various factors, such as infectious relapse or reinfection in previously adequately treated mothers. The study indicated that most cases occur in the lower socioeconomic population groups. Seventy-four per cent of cases were in infants delivered in county hospitals.     

Bias in congenital malformations information from the birth certificate

An analysis of 1983 data from California birth certificates, and from the California Birth Defects Monitoring Program case registry, showed that there is a bias in reporting of congenital malformations on the birth certificate. Hospitals with many births erroneously report lower malformation rates than do hospitals with few births. The bias is partly due to the source of information; larger hospitals are more likely to get their information about malformations from the obstetrician than from the pediatrician. Since malformation data recorded on the birth certificate is both incomplete and biased, at present it is advisable to use these data for epidemiologic analyses with great caution.     

Quantifying the change of melanoma incidence by Breslow thickness

Melanoma incidence has increased throughout the world over the past 25 years. A surrogate for the severity of melanoma is the Breslow thickness of the lesions. Data on melanoma, including Breslow thickness, were collected in 1978-1980 and 1988-1990 from the Tasmania Tumor Registry. We use a density ratio model to quantify the change of melanoma by Breslow thickness. In this model, the ratio of two densities is assumed to have a known form up to a parameter, but the underlying densities are not modeled. This model includes the length bias sampling model as a special case. The Kolmogorov-Smirnov test statistic is used to test the correctness of the density ratio model. Model-based cumulative distribution estimation is studied. Methodology developed in this article is applied to the Tasmania Tumor Registry data.     

Common bile duct injury during laparoscopic cholecystectomy in Ontario: Does ICD-9 coding indicate true incidence?

BACKGROUND: Recent reports in the scientific and lay press have suggested that bile duct injuries during laparoscopic cholecystectomy are common in Ontario. The reports were based on administrative data collected by hospital medical records departments and the Canadian Institute for Health Information (CIHI). The current study involved a direct inspection of hospital records to determine if the CIHI data accurately captured the rate of clinically significant bile duct complications. METHODS: For the period 1991 to 1995, records of bile duct injuries after laparoscopic cholecystectomy were independently evaluated to clarify the clinical significance of the complications. Of 21 Ontario hospitals for which data on complications had been reported in the media, 18 provided detailed information on all patients reported to have suffered bile duct complications classified by the hospital as "major". In addition, each institution provided information on a random sample of one-sixth of the patients who had suffered complications classified as "minor". The reviewer then examined each relevant hospital chart to assess the grade and significance of the reported complications. RESULTS: All 24 bile duct injuries classified by the hospitals as "major" were confirmed as major (clinically relevant) injuries. Of the 80 bile duct complications classified by the hospitals as "minor", 76 (95%) were irrelevant to patient outcome. The discrepancy between data collected and reported frequency of injury lies in the use of nonspecific coding methods. INTERPRETATION: The rate of significant bile duct injuries cannot be inferred from nonspecific codes taken from the International Classification of Diseases, ninth revision, and presented in hospital discharge records. Therefore, such data must be interpreted with extreme caution.     

Descriptive epidemiology of cancer of unknown primary in South Korea, 1999–2017

BackgroundCancers of unknown primary (CUPs) are tumors found after metastasizing from unidentified primary sites; these tumors generally have unknown treatment strategies, expected treatment results, and prognosis. We assessed the epidemiological characteristics of CUPs in Korea.MethodsWe extracted records for 1999 through 2017 from the Korea Central Cancer Registry using the International Statistical Classification of Diseases and Related Health Problems (10th revision) codes for CUP as defined by the International Agency for Research on Cancer. Age-standardized rates and relative survival rates were calculated.ResultsThe CUPs constituted 2.1 % of the total number of cancer registrations in 1999, declining to 0.7 % in 2017. The incidence rate decreased for both sexes (5.35 to 2.20 for men, 3.15 to 1.77 for women). Patients aged 80 years and older had the highest incidence rate at 40.2, and 86.3 % of CUPs occurred in those 50 years of age or older. The cases of retroperitoneum and peritoneum sites increased over time. Cases diagnosed by microscopic methods and death certification only were 62.3 % and 7.9 %, respectively. The malignant neoplasm of the retroperitoneum and peritoneum and unknown primary site had the highest and lowest survival rates, respectively. The 5-year relative survival rate increased over time from 14.2 % (1999–2002) to 27.3 % (2013–2017).ConclusionsOur analysis of data from the Korea Central Cancer Registry found decreasing rates of CUP, although with consistent disparities by patient age and sex. Advancements in diagnostic technology may be decreasing the number of CUP diagnoses. Expanding the amount of information recorded in the registry may further improve diagnostic accuracy.     

MORTALITY RATE FROM SKIN CANCER

Cancer of the glabrous skin (exclusive of cancer of the superficial mucous membranes, melanoma, sarcoma and other rare skin tumors) is a highly curable disease. However, the mortality rate based on United States Public Health Service statistics for the State of California and an analysis of 35 fatalities occurring in 2,122 cases as observed over a 20-year period in the Visible Tumor Clinic at the University of California, is approximately 1.65 per cent to 1.75 per cent.Skin cancer could theoretically approach a 100 per cent cure rate with two simple rules: Firstly, the patient should seek proper medical advice early for all suspicious growths, moles or warts. Secondly, after an exact diagnosis is made by biopsy, the first treatment given by the physician, whether surgical, chemosurgical, electrosurgical or x-ray, should be complete and adequate, for the first time is the “golden opportunity” for cure.     

Accuracy of registration of invasive cervical cancer.

The quality of the data recorded by the British Columbia Cancer Registry for 521 new cases of invasive cervical cancer was evaluated. The registry''s pathological diagnosis in all new registrations of invasive cervical cancer diagnosed in British Columbia between 1977 and 1979 was compared with a best estimate of the true diagnosis, which was determined from the results of the provincial cervical cytology screening program and the clinical charts at the Cancer Control Agency of British Columbia. The registry''s data overestimated the true incidence of invasive cervical cancer by approximately 55%, since 184 (35%) of the cases were incorrectly registered. Of the 184, 141 (77%) were cases of preinvasive cervical cancer, 26 (14%) did not meet the criteria for a true case (i.e., they were not newly diagnosed in British Columbia between 1977 and 1979) and 17 (9%) were cases of invasive cancer of another primary site. In addition, 28 cases of invasive cervical cancer diagnosed in the province during the study period had not been reported to the registry. Thus, both over-reporting and under-reporting occurred. There is a need for constant evaluation of registry data if cancer registries are to fulfil their potential contribution to cancer control programs and research.     

Diagnostic cytologic features of an epididymal melanotic neuroectodermal tumor of infancy present in scrotal fluid: a case report

BACKGROUND: The cytologic features of melanotic neuroectodermal tumor of infancy (MNTI) have been described in rare cases only, and these reports have been based solely on direct smears obtained from aspirated tumor material or from touch preparations of resected tumors. CASE: We report, to our knowledge, the first documented case of an epididymal MNTI diagnosed from aspirated hydrocele fluid processed using the ThinPrep system (Cytyc Corp., Boxborough, Massachusetts, U.S.A.). CONCLUSION: Based on a 15 year retrospective review of scrotal fluids submitted for cytologic evaluation to our laboratory, MNTI represented the sole neoplasm that was represented in the fluid and could be specifically diagnosed. Compared to the direct smear evaluation in our case and other published reports, the ThinPrep method enables the recognition of both neuroblast-like cells and larger melanin-containing epithelial cells in scrotal fluid, thereby aiding in the specific diagnosis of MNTI and minimizing the risk of misdiagnosing this tumor as a more aggressive neoplasm.     

Cancer incidence in Nigeria: A report from population-based cancer registries

Introduction: Cancer has become a major source of morbidity and mortality globally. Despite the threat that cancer poses to public health in sub-Saharan Africa (SSA), few countries in this region have data on cancer incidence. In this paper, we present estimates of cancer incidence in Nigeria based on data from 2 population-based cancer registries (PBCR) that are part of the Nigerian national cancer registry program. Materials and methods: We analyzed data from 2 population based cancer registries in Nigeria, the Ibadan Population Based Cancer Registry (IBCR) and the Abuja Population Based Cancer Registry (ABCR) covering a 2 year period 2009-2010. Data are reported by registry, gender and in age groups. We present data on the age specific incidence rates of all invasive cancers and report age standardized rates of the most common cancers stratified by gender in both registries. Results: The age standardized incidence rate for all invasive cancers from the IBCR was 66.4 per 100000 men and 130.6 per 100000 women. In ABCR it was 58.3 per 100000 for men and 138.6 per 100000 for women. A total of 3393 cancer cases were reported by the IBCR. Of these cases, 34% (1155) were seen among males and 66% (2238) in females. In Abuja over the same period, 1128 invasive cancers were reported. 33.6% (389) of these cases were in males and 66.4% (768) in females. Mean age of diagnosis of all cancers in men for Ibadan and Abuja were 51.1 and 49.9 years respectively. For women, mean age of diagnosis of all cancers in Ibadan and Abuja were 49.1 and 45.4 respectively. Breast and cervical cancer were the commonest cancers among women and prostate cancer the most common among men. Breast cancer age standardized incidence rate (ASR) at the IBCR was 52.0 per 100000 in IBCR and 64.6 per 100000 in ABCR. Cervical cancer ASR at the IBCR was 36.0 per 100000 and 30.3 per 100000 at the ABCR. The observed differences in incidence rates of breast, cervical and prostate cancer between Ibadan and Abuja, were not statistically significant. Conclusion: Cancer incidence data from two population based cancer registries in Nigeria suggests substantial increase in incidence of breast cancer in recent times. This paper highlights the need for high quality regional cancer registries in Nigeria and other SSA countries.