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At least 19 recordsLinked to original sources
PubMed2001

Using the national registry of HIV-infected veterans in research: lessons for the development of disease registries.

Disease-specific registries have many important applications in epidemiologic, clinical and health services research. Since 1989 the Department of Veterans Affairs has maintained a national HIV registry. VA's HIV registry is national in scope, it contains longitudinal data and detailed resource utilization and clinical information. To describe the structure, function, and limitations of VA's national HIV registry, and to test its accuracy and completeness. The VA's national HIV registry contains data that are electronically extracted from VA's computerized comprehensive clinical and administrative databases, called Veterans Integrated Health Systems Technology and Architecture (VISTA). We examined the number of AIDS patients and the number of new patients identified to the registry, by year, through December 1996. We verified data elements against information obtained from the medical records at five VA sites. By December 1996, 40,000 HIV-infected patients had been identified to the registry. We encountered missing data and problems with data classification. Missing data occurred for some elements related to the computer programming that creates the registry (e.g., pharmacy files), and for other elements because manual entry is required (e.g., ethnicity). Lack of a standardized data classification system was a problem, especially for the pharmacy and laboratory files. In using VA's national HIV registry we have learned important lessons, which, if taken into account in the future, could lead to the creation of model disease-specific registries.

HIV Infections↗
PubMed1996

Case ascertainment for state-based birth defects registries: characteristics of unreported infants ascertained through birth certificates and their impact on registry statistics in New York state.

Cases in the New York State Congenital Malformations Registry are reported by hospitals and physicians. This study was undertaken to determine whether case finding should be expanded to include routine matching of Vital Records files to the registry in order to identify unreported children. Matching of children who were born in 1983-86 and who had a congenital malformation noted on their birth certificate yielded 2837 children who were not in the registry. The hospital of record was asked to submit a registry report if the child's medical record contained a congenital malformation. Medical records for 1267 (45%) of these children indicated that the child was normal, with no mention of a malformation. Medical records could not be located for 137. Registry reports were submitted for 1433, 67 of whom were subsequently found in the registry, leaving 1366 bona fide new cases. These new cases differ significantly from registry cases for a number of birth certificate variables and type of congenital malformation. The birth certificate cases were more likely than registry cases to have only one malformation and to have only a minor malformation. The 1366 new cases comprised 2.1% of all registry cases for 1983-86. Their addition increased the statewide prevalence of major malformations by 1.7% from 416.5 to 423.4 per 10 000 livebirths. Except for anencephaly, the prevalence of specific malformations was not altered measurably by the addition of these cases. Lengthy and continuous follow-up was required to obtain registry reports. The small number of cases found does not seem to justify the amount of resources that would be required to use birth certificates routinely to augment case finding in New York State.

Adolescent↗
PubMed2006

The impact of ejection fraction on outcomes after percutaneous coronary intervention in patients with congestive heart failure: an analysis of the National Heart, Lung, and Blood Institute Percutaneous Transluminal Coronary Angioplasty Registry and Dynamic Registry.

BACKGROUND: Patients with congestive heart failure (CHF) have higher rates of adverse outcomes after percutaneous coronary intervention (PCI). A comprehensive analysis of outcomes in patients with CHF in the current era has not been done. We studied the outcomes of patients with CHF who underwent PCI in the National Heart, Lung, and Blood Institute-sponsored Percutaneous Transluminal Coronary Angioplasty (PTCA) and Dynamic registries. METHODS: We evaluated demographic and angiographic characteristics and the clinical outcomes of patients with CHF in the Dynamic Registry and the PTCA Registry, excluding patients with acute myocardial infarction. In the Dynamic Registry, patients with CHF (n = 503) were compared with patients without CHF (n = 4194), and patients with CHF with a preserved ejection fraction (EF) (n = 134) were compared with patients with CHF who have a reduced EF (n = 199). The patients with CHF in the 1997 through 2001 Dynamic Registry (n = 236) were then similarly compared with patients with CHF in the earlier PTCA Registry (n = 117). RESULTS: In the Dynamic Registry, compared with patients without CHF, patients with CHF had a higher-risk clinical and angiographic profile, and a higher mortality rate both inhospital (2.6% vs 0.4%, P < or = .001) and at 1 year (13.1% vs 3.0%, P < .001). Patients with reduced EF had higher inhospital mortality rates and a trend toward higher mortality at 1 year. The patients with CHF in the Dynamic Registry compared with those in the PTCA Registry had a higher risk profile yet had significantly higher procedural success rates and improved clinical outcomes. CONCLUSIONS: Although CHF remains a strong predictor of adverse outcomes after PCI, significant improvement seen in the past decade is likely related to improved procedural techniques and improved medical therapy.

Aged↗
PubMed1989

Bone marrow donor registries: the relation between registry size and probability of finding complete and partial matches.

In a registry of volunteer bone marrow donors, the relation between registry size and probability of finding an exact or partial match for a random recipient cannot be theoretically derived because it depends on specifics of the human leukocyte antigen (HLA) haplotype frequencies in the donor and recipient populations. The relation must be explicitly calculated using empirically determined HLA haplotype frequency data for all possible pairings between a donor and a recipient population. This report describes a general solution to this problem. The method shows that the relation of the probability of matching to registry size is sigmoidal, with small increases in probability at the extremes of registry size and a middle range of registry size within which the probability of matching increases most sharply. This range determines the approximate size of the most cost-effective registry. In addition, for any pairing of donor and recipient populations, there is a maximum probability of identifying a match of a given quality for a random recipient, which cannot be exceeded even if registry size were infinite. This upper limit is a function of the frequency of blank (or unknown) alleles in the donor and recipient populations; the higher that frequency, the lower the maximum probability of achieving any given quality of match. The determinants of the probability of achieving a given quality of match with a given registry size are (1) the genetic heterogeneity within the recipient and donor populations, which increases the registry size required to achieve a given probability of matching, and (2) the degree of genetic homology between the donor and recipient populations, which increases the maximum probability of matching and also lowers registry size requirements. The method described here can be used to estimate donor pool size requirements using any donor and recipient populations for which HLA frequency data are available.

Bone Marrow Transplantation↗
PubMed1990

[The validity of the diagnosis of acute myocardial infarction in 2 registries: the Heart Registry compared to the National Patient Registry].

Surveillance of development in the incidence of heart disease, particularly acute myocardial infarction (AMI) requires a valid system of registration of all cases of the disease. During the period 1972-1981, all admissions with the diagnosis AMI to hospitals in Greater Copenhagen and Arhus were registered in the Heart Register. From 1978, admissions to all Danish somatic hospitals were registered in the National Patient Register. In order to assess the validity of the two registers as regards registration of AMI, the two registers were compared for the years 1979 and 1980. This investigation includes computerized comparison of the registered admissions with AMI and also re-assessment of the diagnosis based on the summaries for a random sample of the admissions. Comparison of the two registers revealed considerable disagreements. Among the individuals who had been admitted with AMI according to the National Patient Register, only approximately 2/3 were registered with this diagnosis in the Heart Register, while almost all persons registered in the Heart Register could be found again in the National Patient Register with the same diagnosis. Technical problems in coding and electronic data analysis in the National Patient Register only appear to explain a lesser fraction of the disagreements as the diagnoses which were summed up in the upper part of the summaries showed reasonably good agreement with the diagnoses in the National Patient Register. Re-assessment of the diagnoses revealed that approximately 90% of the admissions with AMI could be verified, without modification, by reviewing the text of the summaries.(ABSTRACT TRUNCATED AT 250 WORDS)

Denmark↗
PubMed2003

Childhood cancer registries in Ontario, Canada: lessons learned from a comparison of two registries.

Two childhood cancer registries exist in Ontario. One (POGO) accrues by active registration by pediatric cancer centers, utilizing a histologically based classification system. The other accrues by passive linkage within a larger adult oriented cancer registry (OCR) using a topographically based classification. A reportedly high incidence of childhood cancer based on the latter registry prompted a comparison of the content of the two registries over a 2-year period with the hypothesis that there would be systematic accrual errors. All registrations in both registries for the specified period were reviewed systematically and validated by pathology reports. A small number (2.6%) of registrations in the passive registry were not incident cases, while 2 particular pathologic diagnoses were included in the histologically based registry and not the topographically based registry. These were low grade gliomas and Langerhans cell histiocytosis (LCH). The validated annual incident rate (15.6 per 100000 children 0-14 years of age, excluding LCH) is slightly higher than that reported in other industrialized countries. Ninety-six percent of children aged 0-14 were treated in pediatric oncology centers, while only 46% of adolescents aged 15-17 were treated in such centers. Of the remaining adolescents, more than one-third had lymphomas. This maldistribution of care provided for the young adolescent population may compromise their survival prospects. The results of this study should prompt revision of health care policy and patterns of service delivery.

Adolescent↗
PubMed1995

AIDS and cancer registry linkage: measurement and enhancement of registry completeness. The National AIDS/Cancer Match Study Group.

BACKGROUND AND METHODS: To measure AIDS registry completeness for Kaposi's sarcoma (KS) and cancer registry completeness for KS and non-Hodgkin's lymphoma (NHL), we linked AIDS and cancer registries at selected health departments. RESULTS: We found 10,350 people with KS: 1,935 reported only to the AIDS registry, 1,428 reported only to the cancer registry, and 6,987 reported to both. Ninety-three cases of non-HIV-associated KS were expected. For KS, AIDS registry completeness was 84% [6,987/(6,987 + 1,428 - 93)] and cancer registry completeness was 78% [6,987/(6,987 + 1,935)]. Cancer registry completeness for AIDS-related NHL was 76%. CONCLUSION: If this linking were conducted nationally, about 5,700 additional cases of AIDS and 10,000 additional cases of AIDS-related cancers would be recorded.

Acquired Immunodeficiency Syndrome↗
PubMed2001

Renal replacement therapy in Europe: the results of a collaborative effort by the ERA-EDTA registry and six national or regional registries.

BACKGROUND: In June 2000 a new ERA-EDTA Registry Office was opened in Amsterdam. This Registry will only collect core data on renal replacement therapy (RRT) through national and regional registries. This paper reports the technical and epidemiological results of a pilot study combining the data from six registries. METHODS: Data from the national renal registries of Austria, Finland, French-Belgium, The Netherlands, Norway, and Scotland were combined. Patients starting RRT between 1980 and 1999 (n=57371) were included in the analyses. Cox proportional hazards regression was used to predict survival. RESULTS: The use of different coding systems for ESRD treatment by the registries made it difficult to merge the data. Incidence and prevalence of RRT showed a continuous increase with a marked variation in rates between countries. The 2-, 5- and 10-year patient survival was 67, 35 and 11% in dialysis patients and 90, 81 and 64% after a first renal allograft. Multivariate analysis showed a slightly better survival on dialysis in the 1990-1994 (RR 0.94, 95% CI 0.90-0.98) and the 1995-1999 cohort (RR 0.88, 95% CI 0.84-0.92) compared to the 1980-1984 cohort. In contrast, there was a much greater improvement in transplant-patient survival, resulting in a 56% reduction in the risk of death within the 1995-1999 cohort (RR 0.44, 95% CI 0.39-0.50) compared to the 1980-1984 cohort. CONCLUSIONS: This study provides support for the feasibility of a "new style" ERA-EDTA registry and the collection of data is now being extended to other countries. The improvement in patient survival over the last two decades has been much greater in transplant recipients than in dialysis patients.

Austria↗
PubMed1996

Analyses of data quality in registries concerning diabetes mellitus--a comparison between a population based hospital discharge and an insulin prescription registry.

To evaluate the data quality in the Danish National Registry of Patients (DNRP) and the Prescription Registry in the country of Northern Jutland (487,000 inhabitants) concerning insulin dependent diabetes mellitus (IDDM) and insulin treated diabetes mellitus, a comparison between data in the two registries was made. From the Regional Hospital Registry in the County of Northern Jutland, containing discharge diagnoses from all admissions to hospitals in the county, we identified all patients with the IDDM diagnosis between 1987 and 1993. From the Regional Prescription Registry all insulin prescriptions taken up at pharmacies in the county in 1993 were identified. All persons were identified by their individual identification number (CPR-number), and a record linkage between the two data sources was made. The predictive value of an IDDM-registration in the DNRP was 96% and the corresponding completeness 91%. In the Prescription Registry the completeness was 96%. Both registries seem to be valuable study bases for epidemiological research in diabetes mellitus.

Denmark↗
PubMed2006

Rationale and design of a multidisciplinary national real-world registry on carotid stenting: the Italian Registry for Carotid Stenting (RISC).

The Registro Italiano per lo Stenting Carotideo (RISC, Italian Registry for Carotid Stenting) has been organized by Italian specialists from different disciplines directly involved in the prevention of stroke due to carotid plaques through stenting of carotid lesions. The Registry has been endorsed by the national societies of 4 different specialties: vascular surgery, interventional cardiology, radiology, and neuroradiology. Each society contributed in the planning stage. The basis for the registry is to collect data on carotid stenting procedures performed by different specialists with different techniques in a "real-world" setting without the limitations of a randomized clinical trial. The Registry was funded to enroll at least 1200 patients over a minimum period of 36 months. The results will be analyzed using the intention-to-treat principle and are anticipated in late 2006. Primary endpoints of the registry are the 30-day combined death and stroke rate and the occurrence of restenosis and ipsilateral neurological deficit at 12 and 24 months. Considerable attention has been paid to the registry's quality control program to ensure scientific validation. An online database facilitates the collection of data with speed and accuracy.

Carotid Stenosis↗
PubMed2003

A short history of pathology registries, with emphasis on cancer registries.

In the 1950s, major technical problems for ensuring quality and effectiveness of population based registration of cancer and other conditions had been faced and solved. Nevertheless, the classical epidemiological texts published in the 1960s and the 1970s gave little attention to and showed limited enthusiasm for population-based registries of pathology. The latter, in fact, have been marginal to the dramatic evolution of basic conceptual issues such as study design and causal inference. This perspective may change with the use of registries in order to assess quality of care in a public health perspective. In looking retrospectively, marked changes occurred since the 1960s in distribution between countries and continents of cancer registries to the dataset known as "Cancer Incidence in Five Continents" (where worldwide data from cancer registries of quality converge). The number of countries with cancer registries approximately doubled vs. a fivefold increase in both the number of active cancer registries and the total population served by registration. Nevertheless the increases were concentrated in developed countries whereas in developing countries there was a substantial decrease in registration, attributable to the political and economical situation.

Cross-Cultural Comparison↗
PubMed1995

Cancer incidence in The Netherlands in 1989 and 1990: first results of the nationwide Netherlands cancer registry. Coordinating Committee for Regional Cancer Registries.

The first results are presented of the newly established Netherlands Cancer Registry, which covers the whole Dutch population (approximately 15 million people). The registry receives data on incident cancer cases from nine autonomous regional cancer registries. Notification occurs primarily through the national registry of all pathology and haematology departments, with additional reporting by medical records' departments of all hospitals. Data on cancer patients are abstracted directly from the medical records by trained registration clerks. In the years 1989-1990, the most common cancer sites among males were cancers of the lung, prostate and colon. For females, breast cancer ranked first, followed by cancer of the colon and lung. A comparison with age-adjusted (world standard population) incidence rates reported by other western cancer registries showed a relatively high incidence of lung cancer among males (72.9 per 100,000) and breast cancer among females (76.2 per 100,000). Through its near completeness and the high quality of the registered data, the Netherlands Cancer Registry offers excellent opportunities for epidemiological and clinical research.

Breast Neoplasms↗
PubMed2005

Medical Record Linkage of Anonymous Registries without Validated Sample Linkage of the Dutch Perinatal Registries.

This paper describes the linkage of data from three Dutch Perinatal Registries: the Dutch National Midwife Registry, the Dutch National Obstetrics Registry and the Dutch National Pediatrics Registry, for the year of 2001. All these registries are anonymous and lack a common identifier. We used probabilistic and deterministic record linkage techniques to combine data from the mother, delivery and child involving to the same pregnancy. Records of singleton and twin pregnancies were linked separately. We have developed a probabilistic close method based on maximum likelihood methods to estimate the weights of individual linking variables and the threshold value for the overall weight. Probabilistic linkage identified 80% more links than a full deterministic linkage approach. External validation revealed an error rate of less than 1%. Our method is a flexible and powerful method to link anonymous registries in the absence of a gold standard.

Female↗
PubMed1987

Diabetes registries in Asia. Diabetes Epidemiology Research International Registry Group.

The importance of diabetes registries and the current status of registries in Asia are described. Such registries are needed in order to understand the etiology and natural history of the disease. Moreover, registries provide important public health information to the community. Guidelines for registry development are presented, and the existing, as well as planned, registries in Asia are reviewed.

Asia↗
PubMed1998

[Index for evaluating completeness of registration in population-based cancer registries and estimation of registration rate at the Osaka Cancer Registry between 1966 and 1992 using this index].

The quality of population-based cancer registries has been measured by the indices of the proportion of total incident cases (DCO%) registered by death certificate only (DCO), and the ratio of incidence to mortality (I/D ratio). Recently it has been recommended that DCO% should be used as an index for the reliability of diagnosing cancers and that the proportion of cases first notified via death certificate (DCN, DCN%) be used as an index for the completeness of registration. Parkin introduced a method to estimate the registration rate, the estimated proportion of the "true incidence" that are registered in population-based registries. We recommend a modified method for estimating the registration rate for cancer registries where DCN% is relatively high, as it is in Japan, as Parkin's method may overestimate the registration rate. The method is as follows: the registration rate = (1-DCN% x 1/D ratio)/(1-DCN%). The registration rates at the Osaka Cancer Registry between 1966 and 1992 were estimated using our method. During this period, the yearly registration rate was 74.6-78.4% for males and 69.1-73.3% for females. When the cancer cases were looked at according to site, the yearly registration rate was 74.2-81.6% for stomach cancer, 81.2-89.3% for lung cancer, and 71.3-76.9% for uterine cancer. These results show that the registration rate is high for cancers that have an unfavorable prognosis and low for cancers that have a favorable prognosis. We recommend that all cancer registries in Japan calculate the completeness of registration by utilizing DCN defined as the sum of DCO plus cases not reported as cancer but with supportive clinical information of such obtained through survey of the registry for DCN.

Death Certificates↗
PubMed2002

Lifeline Registry of Endovascular Aneurysm Repair: Registry data report.

PURPOSE: The goal of the Lifeline Endovascular Registry is to provide a minimal, yet comprehensive, data set of patient follow-up that can evaluate the long-term safety of endovascular grafts used in abdominal aortic aneurysm repair. METHODS: Follow-up data have been collected on 1757 patients for this first report, including 1646 endovascular graft recipients and 111 surgical patients receiving treatment for abdominal aortic aneurysm. RESULTS: Logistic regression of 1-year survival indicates that the factors most likely to decrease 1-year survival for the surgical group are renal failure and larger aneurysm size. For the endovascular graft recipients, the presence of renal failure, chronic obstructive pulmonary disease, congestive heart failure, larger aneurysm size, and increased age demonstrates a decrease in 1-year survival. Approximately 80% (1309) of the endovascular recipients have been followed for 1 year. Of these 1309 patients, 17% (222) have incurred an endoleak, and enlargement of the aneurysm has occurred in 4.6% (60). There was a total of 80 (4.9%) endovascular graft recipients converted to surgery. The most prevalent factors causing conversion to surgery were an increase in aneurysm diameter, aneurysm rupture, and the presence of a proximal endoleak. CONCLUSIONS: Although the data collected by the Registry thus far are limited, we anticipate rapid expansion of the Registry to include data from other manufacturers and investigators. Nevertheless, early data analysis does demonstrate the importance of surveillance of endovascular graft recipients. Through the collection and analysis of Registry data, adverse events continue to be captured, enabling the monitoring of long-term safety of endovascular grafts and the evaluation of graft performance. Data on comorbidities and postoperative factors, collected and evaluated for their effect on survival of the graft recipients, also provide information on optimal patient selection and management. We expect that the next report will support and expand on these findings, providing continuing evidence of the value of a national endovascular registry.

Aged↗
PubMed2000

Comparative study of ovarian cancer histopathology by registry pathologists and referral pathologists: a study by the Gilda Radner Familial Ovarian Cancer Registry.

OBJECTIVE: The aim of this study was to evaluate whether there is a significant difference in the pathology diagnoses of women in the Gilda Radner Familial Ovarian Cancer Registry between the two expert Registry pathologists and the referral pathologist. Inaccuracies in verification that ovarian cancer did occur in family members could lead to unnecessary prophylactic surgery or genetic testing. METHODS: A retrospective review was performed of (1) site of malignancy; (2) histopathology of malignancy; (3) grade of malignancy; and (4) the presence or absence of malignancy between the Registry and referral pathologists. RESULTS: There was 95.3% complete agreement between the Registry and the referral pathologist on site of origin with a major difference in only 1.0% of the cases. In comparison of histopathology, there was a 61.7% complete agreement, and only 1.0% were considered major differences. There was 68.8% complete agreement in grade of the malignancy, whereas 2.3% were considered major differences. CONCLUSION: When constructing a family pedigree, it is important to obtain pathology reports to confirm the index case diagnosis of the presence or absence of ovarian cancer. However, because of the small percentage of major differences in diagnosis between the two Registry pathologists and the multiple referral pathologists, we believe genetic counselors and treating physicians can rely, in most instances, on the original histopathology report of verification of ovarian cancer without review of the original histopathology slides when recommending surveillance, genetic testing, and/or prophylactic surgery.

Female↗