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PubMed2006

The Internet Tracking Registry of Acute Coronary Syndromes (i*trACS): a multicenter registry of patients with suspicion of acute coronary syndromes reported using the standardized reporting guidelines for emergency department chest pain studies.

STUDY OBJECTIVE: Observational studies of well-described patient populations presenting to emergency departments (EDs) with suspicion of acute coronary syndrome are necessary to understand the relationships between patients' signs and symptoms, cardiac risk profile, test results, practice patterns, and outcomes. We describe the methods for data collection and the ED population enrolled in a multicenter registry of patients with chest pain. METHODS: Patients older than 18 years, presenting to one of 8 EDs in the United States or 1 ED in Singapore, and with possible acute coronary syndrome were enrolled in the Internet Tracking Registry of Acute Coronary Syndromes between June 1999 and August 2001. Prospective data, including presenting signs and symptoms, ECG findings, and the ED physician's initial impression of risk, were systematically collected. Medical record review or daily follow-up was used to obtain cardiac biomarker results, invasive and noninvasive testing, treatments, procedures, and inhospital outcomes. Thirty-day outcomes were determined by telephone follow-up and medical record review. RESULTS: The registry includes 15,608 patients, with 17,713 visits. Chest pain was the chief complaint in 71% of visits. The ECG was diagnostic of ischemia or infarction in 10.1% and positive cardiac biomarkers were observed in 10% of visits. Forty-three percent of patients were sent home directly from the ED. Of admitted patients, 5% died by 30 days, and 3% had documented coronary artery disease or had undergone percutaneous coronary intervention or coronary artery bypass grafting within 30 days. For patients discharged directly from the ED, 0.4% died or had a documented myocardial infarction within 30 days. Coronary artery bypass graft surgery, percutaneous coronary intervention, or a diagnosis of coronary artery disease was found in 0.5% of discharged patients. CONCLUSION: A unique description of undifferentiated ED chest pain patients with suspected acute coronary syndrome is provided. The data set can be used to generate and explore hypotheses to improve understanding of the complex relationships between presentation, treatment, testing, intervention and outcomes.

Biomarkers↗
PubMed2005

Using cancer registry data for survival studies: the example of the Ontario Cancer Registry.

BACKGROUND AND OBJECTIVES: The Ontario Cancer Registry (OCR) is a population-based tumor registry created to provide data for epidemiologic research and for cancer surveillance. Recently it has been used for health services research. The objective of this project was to assess the quality of the OCR data that is used in survival analysis. METHODS AND DESIGN: Clinical information for 898 patients with squamous carcinoma of the head and neck including index tumor site, date of diagnosis, vital status, date of death, and cause of death from a prospective database at the Kingston Regional Cancer Center is compared to the same data elements in the OCR for the same patients. RESULTS: There is no statistically significant difference in disease-specific survival between the information from the two databases (log rank P = .89). The OCR captured and correctly assigned index tumor site for 81.4% (detection rate). The site assignment was accurate 90.9% of the time (confirmation rate), there was agreement on vital status (dead vs. alive) for all but one patient, and there was excellent agreement on date of death. However, cause of death (cancer vs. noncancer) based on death certificates had a 31% error rate. CONCLUSION: Researchers can be confident in the survival analysis generated from data in this registry, but need to be aware of potential sources of error.

Carcinoma, Squamous Cell↗
PubMed2000

Strategies of patient care in acute coronary syndromes: rationale for the Global Registry of Acute Coronary Events (GRACE) registry.

An abundance of evidence is available from large, randomized clinical trials supporting the efficacy of therapies for the management of patients with acute coronary syndromes. For ST-segment elevation myocardial infarction (MI), a variety of databases can be used to assess how these therapies, both pharmacologic and invasive, are being integrated into real practice. Little information is available, however, with regard to how newer treatments are actually being implemented for patients with unstable angina and non-ST-segment elevation MI. There are several important issues to consider in evaluating current treatment practices for acute coronary syndromes, including limitations of clinical trial databases, a trend toward progressive shortening of length of hospital stay, and variations in the availability of resources among treatment centers. In response to the need for a broader database that would address the global impact of clinical management practices in acute coronary syndromes, the Global Registry of Acute Coronary Events (GRACE) Registry has been established. The GRACE Registry will initially collect data on patient care from a variety of treatment centers in 14 countries, the plan being to eventually enroll 10,000 patients per year. This international observational database will obtain information on the complete spectrum of acute coronary syndromes, with the specific goals of describing diagnostic and treatment strategies, determining hospital outcomes, improving quality of care, and developing hypotheses for future clinical research.

Angina, Unstable↗
PubMed1999

The development of an international surgical registry: the ECSUR project. The European Cardiac Surgical Registry.

OBJECTIVES: Cardiac surgery is the first of any therapeutic discipline to attempt to establish a major international registry on a patient-by-patient basis. Being the first necessarily imposes a challenge since no rules or guidelines exist. Possibilities and boundaries must be identified. METHODS: The EACTS database committee established ECSUR (The European Cardiac SUrgical Registry) with the aim of collecting patient-by-patient information from centres across Europe. It was decided to collect patient data in three areas; adult cardiac surgery, paediatric cardiac surgery and thoracic surgery. Currently, these three areas are in different stages of development, with multinational data collection now having already commenced in adult cardiac surgery. RESULTS: After just over a year of data collection ECSUR has now received data from 98 centres in 30 countries, encompassing approximately 100,000 patients. Three national cardiac surgical registries currently send their data to ECSUR, and agreement has been reached with three other countries for prospective data sharing during 1999. CONCLUSION: This paper describes how ECSUR was established, the on-going status of the project, and how the project has now developed a global perspective through a joint European and US initiative to undertake international dataset unification for surgeons worldwide, by the definition of core adult cardiac, paediatric cardiac and thoracic surgical datasets.

Data Collection↗
PubMed2000

Apheresis registry in France: indications, techniques, and complications. French Registry Study Group.

The French Registry for Plasma Exchange (PE) was set up in 1985. For 13 years it has allowed for the analysis of the techniques used, along with the indications and complications. After a decrease in the number of participating centers due to the heaviness of the data collection mode, the telematic network created in 1991 led to a new increase in participants from 26 in 1990 to 69 in 1998. Follow-up shows a slight fall in activity since some protocols ended, while the neurological pathologies remain the most frequent indicators. The important modifications observed over the years are the increase of the centrifugation technique, the development of plasma treatment, and the plasma substitution by an association of albumin-pentastarch. The French Registry for plasma exchange is the largest data base dealing with therapeutic hemapheresis. The registry set-up through the internet is the first step toward an international data base.

Blood Component Removal↗
PubMed1989

Epidemiologic data on adult glaucomas. Data from the Hospital Discharge Registry and the Registry of Right to Free Medication.

The prevalence of glaucoma was studied using material from the Registry of Right to Free Medications, completed by the Social Insurance Institution of Finland in 1985. A total of 31,981 patients (10,022 males and 21,959 females) received free medication for glaucoma in 1985. Total crude glaucoma prevalence in Finland in 1985 was 0.67%, calculated for the total population (all glaucomas) according to data from this registry. The crude prevalence for those of 40 years of age and over, was 1.7% and for those of age 70 years and older, 6.1%. Age adjusted prevalence showed a female excess of cases with a male-female ratio of 1/1.3. The incidence of different types of glaucoma was studied using the Hospital Discharge Registry for the years 1973-1982. For this 10-year period, a total of 48,864 patients with glaucoma and 10,614 glaucoma suspects were found in a compilation based on an International Classification of Diseases (8th edn.) code number. Of all adult glaucomas, 67% were primary glaucomas, while 33% were secondary glaucomas. An increase in the incidence of glaucoma was noted during the 10-year period, especially for the chronic simple and capsular glaucoma groups. Females were at higher risk for chronic simple, acute angle-closure, capsular and chronic angle-closure glaucoma; whereas, males were at greater risk for other types of secondary glaucomas. The patients with secondary glaucoma were the youngest (mean age 53.5 years in males, and 60.3 years in females), while the patients with capsular glaucoma were the oldest (mean age 71.9 years in males, and 72.8 in females).

Adult↗
PubMed1999

Comparison of the international immune tolerance registry and the North American immune tolerance registry.

Two immune tolerance registries--the International Immune Tolerance Study Group (ITSG) and North American Immune Tolerance Study (NAITS) - are compared and findings from combined data reported. The registries differed with respect to data collection tools, location, host and environmental factors, start date distribution and treatment products. The success and failure rates were similar in the two studies. There was a highly significant association between maximum historical titre and immune tolerance success; the success rate decreased as the historical titre increased. There was a significant association between inhibitor titre immediately prior to treatment and the probability for treatment success, and between outcome and time from diagnosis to treatment in the ITSG (of borderline significance in the NAITS). There was a significant association between outcome and dose, though the direction of the associations was not the same. In the ITSG, success was associated with doses greater than or equal to 200 IU/kg/day, while in the NAITS, greater success was observed with doses of less than 50 IU/kg/day. There was no association between outcome and treatment product. Data from the two registries were combined to produce a table for calculating the chance of successful treatment by historical titre, pretreatment titre, and dose.

Adult↗
PubMedDate not supplied

The National Exposure Registry: procedures for establishing a registry of persons environmentally exposed to hazardous substances.

The Agency for Toxic Substances and Disease Registry has, as mandated in Superfund legislation, established the National Exposure Registry (NER). The purpose of the NER is to assess and evaluate the potential relationship between adverse health effects and environmental exposure for an exposed population, particularly the relationship between chronic health effects and long-term, low-level chemical exposures. The NER's primary goal is to facilitate epidemiology research by establishing multiple data bases (subregistries) that contain demographic, environmental, and health information on large populations exposed to selected chemicals. The Registry data mainly serve the purpose of being hypothesis-generating rather than hypothesis-testing. The NER is currently composed of subregistries of: (1) persons exposed to volatile organic compounds (VOCs)--a subset of registrants in whom trichloroethylene (TCE) is the primary VOC exposure, but others are present (N = 4,832), a subset in whom benzene is the primary VOC exposure (N = 1,142), and a subset in whom trichloroethane (TCA) and TCE are the highest VOC exposures (N = 3,666); and (2) persons with dioxin exposure (N = 250). Chromium and radioactive substances subregistries are planned.

Benzene↗
PubMed1997

Development and use of the North American Association of Central Cancer Registries standards for cancer registries.

Lack of standardization in data items, definitions, and codes in cancer registries has complicated analyses of pooled cancer data and has limited sharing of methods and software. The North American Association of Central Cancer Registries (NAACCR) has successfully developed and implemented extensive standards for data items and processes used by cancer registries in the United States and Canada. The article describes NAACCR's approach to achieving concensus and facilitating adoption of standards by combining volunteer and staff efforts, including broad-based representation in committees and providing shared automated software. Specific standards and their rationales are provided.

Data Collection↗
PubMed2003

Report from the Familial Amyloidotic Polyneuropathy World Transplant Registry (FAPWTR) and the Domino Liver Transplant Registry (DLTR).

Familial amyloidotic polyneuropathy (FAP) is a fatal disease, belonging to a group of systemic disorders caused by an amyloidogenic transthyretin (TTR) variant. Orthotopic liver transplantation (OLT) eliminates the source of the variant TTR molecule, and is presently the only known curative treatment. A fascinating consequence of this treatment is the possibility of retransplanting the removed FAP liver into another non-FAP patient, which created the so-called domino liver transplantation (DLT) procedure. The Familial Amyloidotic Polyneuropathy World Transplant Registry (FAPWTR) was initiated in 1995, and in 1999 a Domino Liver Transplantation Registry (DLTR) was created. Herein data from these Registries are presented. A total number of 56 centers in 16 countries have performed OLT for FAP, and, today, approximately 65-70 OLTs are performed annually worldwide. During the last decade, a total of 623 patients have undergone 660 OLTs. Patient survival is excellent and comparable to the survival with OLT performed for other chronic liver disorders. Twenty-six centers in 12 countries have reported recipients of DLT grafts and presently 30-35 DLTs are performed annually. The FAPWTR and DLTR have become useful tools in evaluating the potential risks and benefits of these relatively new therapeutic options, in addition to encouraging a rewarding collaboration between centers involved in the management of these patients.

Amyloid Neuropathies, Familial↗
PubMed1989

Pancreas transplantation: report from the International Registry and a preliminary analysis of United States results from the New United Network for Organ Sharing (UNOS) Registry.

This report contains information on analysis of 2,292 pancreas transplants worldwide reported to the International Pancreas Transplant Registry from 1966 through 1989, with 1-year recipient survival rates improving from 39% to 71% to 80% to 87% and 1-year graft survival rates from 5% to 26% to 40% to 56% for 1966 to 1977 (n = 64), 1977 to 1983 (n = 336), 1984 to 1985 (n = 364), and 1986 to 1989 (n = 1,220) cases, respectively. The last 2 eras were combined for analyses of multiple variables. In the analyses of all world cases for the 1984 to 1989 period (n = 1,604), the most important finding was the influence of HLA-DR matching or mismatching on pancreas graft survival rates; 1-year function rates for grafts in recipients matched for 2, 1, or 0 DR antigens with the donor were 73% (n = 52), 53%, (n = 468), and 48% (n = 67) (p less than 0.005 for all comparisons). Likewise, in an analysis of 1984 to 1989 cases according to DR mismatching, the 1-year graft survival rates with 0, 1, or 2 DR mismatches were 63% (n = 128), 50% (n = 583), and 49% (496) (p less than 0.02). An analysis of the 1986 to 1989 era cases worldwide confirms the trend in the period analysis for bladder drainage (BD) to be associated with significantly higher graft survival rates than intestinal drainage or duct injection, at 1-year being 59% (n = 656), 47% (n = 97), and 54% (n = 210). Likewise, for the 1986 to 1989 era, worldwide 1-year pancreas graft functional survival rates were significantly higher in recipients of simultaneous-pancreas/kidney transplants (SPK) than in recipients of pancreas-after-kidney (PAK) or a pancreas-transplant-alone (PTA); 63% (n = 865), 45% (n = 186), and 37% (n = 165). In a new analysis of the United States cases reported to the UNOS Registry from October 1, 1987 through June 30, 1989, 1-year patient and graft survival rates were 91% and 69%. Almost all United States cases reported to the UNOS Registry during 1987 to 1989 were with BD (n = 324).(ABSTRACT TRUNCATED AT 400 WORDS)

Adult↗
PubMed1989

Report from the 1988 Trauma Registry Workshop, including recommendations for hospital-based trauma registries.

Trauma registries are being used increasingly as resources for monitoring trauma care. As a result of rapid diffusion, these information systems tend to differ from one another in several important respects, including operational case criteria, data content and definitions, and coding format. Participants in a 2 1/2-day workshop held in January 1988 at the Centers for Disease Control addressed the need for standardizing trauma registries. The workshop brought together a multidisciplinary group of researchers, medical practitioners, and health planners and administrators. The participants formulated responses to specified questions and drafted a set of trauma registry data elements. Results from the meeting provide the basis for the Centers for Disease Control's recommendations described in this article.

Hospital Records↗
PubMed1987

The vascular registry--a responsibility for all vascular surgeons? Vascular Registry in Southern Sweden (VRISS).

The value of a medical technique or a surgical method is demonstrated when it is applied in everyday, community practice. Peripheral vascular surgery has become an increasingly common mode of treatment in non-university, community hospitals in Sweden during the last decade. Most reports on the outcome of vascular surgery, however, emanate from University hospitals, presumably with better facilities and perhaps selected patients. In an attempt to explore the value and application of peripheral vascular surgery, a registry in southern Sweden (VRISS) has been organized. In this communication some aspects on starting the registry and results from a pilot period are presented. This registry will be of particular interest because it covers all vascular operations within a defined population from a geographic area in Sweden.

Humans↗
PubMed1993

Pancreas transplant results in United Network for Organ Sharing (UNOS) United States of America (USA) Registry with a comparison to non-USA data in the International Registry.

As of 1993, more than 5,000 pancreas transplants were reported to the International Pancreas Transplant Registry. More than 3,600 were performed in the USA, including 3,000 since the inception of the UNOS Registry in October, 1987. The BD technique was used for 96% of USA cases but for only 63% of non-USA cases. In the overall analysis of USA BD cadaveric pancreas transplants reported to the Registry by November 1993 (n = 2,464), patient survival and pancreas graft function survival rates at one year were 91% and 72%, respectively, 87% and 67% at 2 years, and 84% and 62% at 3 years. When the USA data for BD cases were analyzed according to the 3 major recipient categories (simultaneous pancreas/kidney transplants [SPK] [n = 2,112]; pancreas after kidney transplants [PAK] [n = 205]; and pancreas transplants alone [PTA] [n = 147]), patient survival rates were no different (91%, 92%, and 91% at one year, respectively), but pancreas graft survival rates were significantly higher in the SPK than in the PAK and PTA categories (76%, 47%, and 48%, at one year, respectively). In the SPK group, kidney graft survival rates at one year were 85%. Although the overall results were not as good for non-USA as for USA pancreas transplants, this was probably because the results with non-BD techniques were not as good as when BD was used, and in Europe more than one-third of the cases used techniques other than BD. The patient, pancreas, and kidney graft survival rates for BD SPK transplants in Europe (n = 522) and other non-USA locations (n = 64) were similar to those in the USA: in Europe 93%, 77%, and 84%, respectively, at one year. The graft survival rates for solitary pancreas transplants, however, were higher in the USA. Outcomes were also compared according to whether induction immunotherapy in USA recipients included ALG/ATG, OKT3, or neither. In the SPK category, there was no difference among the protocols: one-year graft survival rates were 76% with ALG/ATG (n = 1,141), 78% with OKT3 (n = 673), and 71% with neither (n = 249). In the PAK category, the use of OKT3 (n = 37) was associated with lower graft survival rates than when ALG/ATG (n = 133) or neither (n = 34) were given: 26%, 58%, and 53% at one year, respectively.(ABSTRACT TRUNCATED AT 400 WORDS)

Adult↗
PubMedDate not supplied

[The descriptive epidemiology of patients with kidney failure on chronic dialysis treatment. The results of the Lazio Population Registry. The Lazio Dialysis Registry].

The study presents the methodology and selected results of the Lazio Dialysis Registry. The registry, begun in 1994, documents basic demographic data, minimal clinical information and vital status of all end-stage renal disease patients on dialysis treatment in Lazio region. At June 1994 the register included 2834 patients; during the next 12 months, 618 new patients had been notified. In one-year follow-up, among prevalent patients, 308 deaths and 90 renal transplants, and among new patients, 80 deaths and 9 renal transplants were observed. The mean age of the studied population was 59.6 (SD 15.1) for prevalent patients and 61.9 (SD 15.3) for new patients. Among prevalent patients 58.8% were males and 41.2% females, among new patients these figure were 62.1% and 37.9%, respectively. The prevalence rate was 55 per thousand population and the incidence rate was 12.0. The leading cause of renal failure was glomerulonephritis in prevalent patients (27.7%), among new patients the most representative group was nephropathies of unknown origin (27.0%). About 85% were on hemodialysis treatment, and about 4% on peritoneal dialysis. The cumulative survival rates during the one-year follow-up was 81.9%, among patients with age less than 65 years a better survival for males (94.9%) than females (90.1%) was observed. The results of the first year of activity show that a population-based registry of patients on chronic dialysis treatment can be an useful tool for service planning and epidemiological research.

Adolescent↗
PubMed1998

[Comorbidity factors in the dialysis registries and the experience of the Piedmontese Registry].

The parameters used at present by the Dialysis and Transplant Registries of various countries to evaluate dialyzed patients' comorbidity show great differences, mostly owing to the different epidemiological, social and racial characteristics of the studied populations. Moreover, the typology of the dialyzed patient is changing: the mean age is increasing, patients with high-risk conditions as vasculopathy and diabetes are widely accepted to the treatment. Thus the Piedmont Registry will be implemented as follows: new fields about comorbidity for clinical (blindness, cachexy and dementia), social (smoking, alcohol and drugs addiction) and diagnostic (type of diabetes, of neoplasm, of cardiovascular problem) parameters, and questions needing dichotomic response (vasculopathy yes or no) will be added. The exact time of appearance of any risk factor will be requested, and a field for "others" risk factors will be added as well, trying to deeply identify the dialytic population not affected by any comorbidity factor. Finally, a new improved control system of the collected data will be used: our registry needs to be implemented in the future by such evaluations, to go on giving useful informations about epidemiology of the dialyzed patients.

Adolescent↗
PubMed1998

[Determination of one national standard for children with congenital anomalies in the National Obstetrical Registry and in the National Neonatal Registry].

OBJECTIVE: To determine if the birth prevalence data on congenital malformations in the national perinatal registries, the Landelijke Verloskunde Registratie (LVR) (National Obstetrical Registry) and the Landelijke Neonatologie Registratie (LNR) (National Neonatological Registry), can be combined into one nationwide database, and if so to determine the validity of this database. DESIGN: Descriptive. SETTING: TNO Prevention and Health, Leiden, the Netherlands. METHODS: Investigation of the registered number of congenital malformations in the LVR/LNR, the amount of overlapping and the possibility of combining the LVR and LNR into one nationwide database. The validity of this database was evaluated by comparing the total number of registered children with the total number expected in the Netherlands. Furthermore the total number of children registered in the nationwide database was compared with children registered by the European registration of congenital anomalies and twins (EUROCAT) in the Northern Netherlands. RESULTS: The LVR and LNR were mostly complementary with respect to the registration of congenital anomalies and could be combined to one nationwide database. For sixteen important diagnoses this nationwide database contained approximately 87% of the total number expected in the Netherlands. Comparing this database with the data of EUROCAT in the Northern Netherlands showed that one-third of these congenital malformations (n = 229 in 217 children) were registered in both systems, while 99 (43%) were only registered by EUROCAT and 50 (22%) only by the nationwide database. CONCLUSION: It was possible to create a nationwide database, which can supplement the regional EUROCAT data with nationwide data on sixteen important diagnoses of congenital malformations.

Child↗