Use Of Registry Data Research Articles

The Risk for Schizophrenia From Childhood and Adult Infections

The Risk for Schizophrenia From Childhood and Adult Infections

Physicians Advise Use of Registry Data for PQRI

Physicians Advise Use of Registry Data for PQRI

Troponin I as a Predictor of Coronary Heart Disease and Mortality in 70-Year-Old Men

Cardiac troponin I (cTnI), a standard for detection of myocardial damage, has recently been reported to predict acute myocardial infarction or death in patients with unstable coronary heart disease (CHD). Cardiac TnI concentrations increase with age in subjects free from clinical signs of CHD, suggesting silent myocardial damage. We investigated the association between cTnI and future CHD and mortality in a community-based cohort of men. A community-based study was conducted from August 1991 to May 1995 among 1203 men in Uppsala, Sweden, aged 70 years at baseline with a follow-up of up to 10.4 years with the use of registry data (National Board of Health and Welfare, Sweden). CHD was defined with the use of data taken from the Cause of Death Registry or from first-time hospitalization for CHD as recorded in the Hospital Discharge Registry. Cardiac TnI concentrations were measured blinded for outcome, in frozen baseline plasma samples, with the use of the AccuTnI from Beckman Coulter, Inc. Hazard ratios (HRs) from Cox proportional hazards are presented with 95% confidence intervals (CIs) for a 1-SD increase. In men free from cardiovascular disease (CVD), cTnI predicted death (HR, 1.26; 95% CI, 1.08 to 1.46; P=0.003) or first CHD event (HR, 1.31; 95% CI, 1.11 to 1.54; P=0.001) after adjustment for conventional risk factors: total and HDL cholesterol, plasma glucose, body mass index, smoking, and systolic blood pressure. In this first longitudinal report, cTnI was shown to predict death and first CHD event in men free from CVD at baseline, indicating the importance of silent cardiac damage in the development of CHD and mortality.

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

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. 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. 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. 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.

Completeness of Information on Adjuvant Therapies for Colorectal Cancer in Population-Based Cancer Registries

Population-based cancer registries represent a potentially valuable tool to evaluate treatment; however, information on the completeness of registry treatment data is sparse. To evaluate the completeness of registry treatment data for patients with colorectal cancer and to identify predictors of complete reporting. We surveyed physicians or reviewed office records of 1956 northern California patients diagnosed with colorectal cancer during 1996 to 1997 to assess the completeness of registry data regarding use of adjuvant chemotherapy and radiation therapy. For patients with a record of receipt of chemotherapy in either the registry or physician survey, information was in the original registry records for 82.0%. In the multivariate analysis, completeness of chemotherapy reporting was lower for patients aged 65 to 74, those with colon cancer, [corrected] and higher for patients treated in hospitals that are part of a large health maintenance organization (HMO). For patients with a record of receipt of radiation therapy, information was in the original registry records for 90.2%. In the multivariate analysis, completeness of radiation therapy reporting was higher for patients aged 18 to 54 and those treated in HMO hospitals. Because the completeness of the registry treatment data varied by patient and hospital characteristics, use of registry data without supplementation could bias estimates of the proportion of patients treated, and of the patient and provider characteristics associated with treatment. Enhanced cancer registry data could be a valuable component of population-based cancer data systems for assessing quality of cancer care.

Present status and research activities of cancer registries in Japan.

Population-based cancer registries in Japan were first established in the cities of Hiroshima and Nagasaki in 1957-1958 for assessing radiation effects and in Miyagi in 1959 for promoting epidemiological researches, while most other prefectures in Japan set up cancer registries as a part of their own cancer programs. This resulted in the broader use of registry data in Japan. In 1975, the Research Group for Population-based Cancer Registration in Japan was first organized with a research grant under the National Cancer Research Promotion Program. Since then, continuous efforts have been made by the Group to improve the quantity and quality of registry data and to develop methodologies to utilize it. Studies being conducted using registry data cover (1) descriptive epidemiology, (2) analytical epidemiology, (3) evaluation of screening programs, and (4) evaluation of regional cancer medical care. In 1992, 32 regional cancer registries which were operating in Japan set up the Japanese Association of Cancer Registries. However, there are still many difficulties to overcome in order to achieve completeness of reporting in registries. Further improvement of reporting rate, together with standardization of registry data are left for future efforts.

A national quality improvement effort: cancer registry data.

Cancer registries are sources of epidemiological, patterns-of-care, and outcome data for local, regional, state, and national studies of patients with cancer. Since 1976, these registries have formed a voluntary network of contributors to annual patient care studies under the aegis of the National Cancer Data Committee of the Commission on Cancer. These annual studies provide timely clinical information that is widely disseminated to physicians, allied health personnel, administrators, health care planners, and public and private agencies. The use of the data has grown exponentially and has been the basis for more than 90 publications. Merging this activity with the National Cancer Data Base has further expanded the demand and use of registry data. This study was undertaken to respond to inquiries as to the validity of the data and the qualifications and competency of cancer registrars. It provides the baseline for cancer registry data quality and serves as a quality management tool to identify opportunities to enhance data quality.

Determining zygosity in the Vietnam Era Twin Registry: an approach using questionnaires.

The Vietnam Era Twin Registry (VETR) is a registry of 7375 American male veteran twin pairs born between 1939 and 1955 who served in the armed forces of the United States between 1964 and 1975. Optimal use of registry data requires the determination of zygosity. Two approaches are available: analysis of blood genetic marker systems and responses of twins to questions about sibling similarity. Zygosity for the VETR was determined using the questionnaire technique supplemented with blood group typing data abstracted from military records. After comparing four alternative zygosity assignment methods, a logistic regression technique which uses discriminating variables based on race was selected. The approach is similar to that described by Magnus et al. (1983) in their study of Norwegian twins, suggesting that questionnaire responses are independent of nationality and reinforcing the reliability of the questionnaire method for zygosity ascertainment.

Frequency of births with potentially avoidable serious chromosomal anomalies in EEC countries, 1979-1982.

Child bearing at an early age and prenatal cytogenetic diagnosis in pregnant women of advanced age, combined with selective abortion, make it possible to avoid the birth of many children with serious chromosomal anomalies. To see how many of such births were still avoidable in Europe, data from 16 regional EUROCAT registers of congenital anomalies in nine EEC countries were analysed. In the period 1979-1982 about 30% of children with unbalanced anomalies of autosomes were born (live- and still-births) to mothers over 35 years of age. This amounts to an estimated 1300 cases yearly in the entire population of the nine countries. The approach shows the possible use of registry data for monitoring effects of avoidance strategies.

The comprehensive cohort study: the use of registry data to confirm and extend a randomized trial.

There are distinct advantages to the comprehensive cohort design for randomized clinical trials. The design allows the researcher to systematically compare the trial participants and the trial results with the characteristics and results in the population of eligible patients who were not randomly assigned to treatment. There are some problems with this design. The added costs of enrollment and follow-up for the nonrandomized cohort can add substantially to the cost of a trial. As the CASS example illustrates, careful attention must be given to definition of the treatment groups in the nonrandomized cohort. For the randomized patients, group assignment by "intention to treat" is preferred in most cases. The definition of "intention to treat" in the nonrandomized cohort may be difficult, since the patient may receive recommendations from several sources and, in the case of chronic disease, the decision may be postponed for a long period. This problem is not specific to the comprehensive cohort design, however, and a comparison group of concurrently enrolled and followed patients is almost always preferred over a comparison group found elsewhere.