SEARCH · PubMed Health

Results for “Registries”

Explore indexed PubMed citations for clinical trials, systematic reviews and public health research. Read source abstracts and follow each citation to its original PubMed record.

Quote a phrase for an exact phrase match. Source license links do not imply unrestricted reuse.

At least 109 records · Page 6Linked to original sources

PubMed1989

EDTA Registry centre survey, 1986. Report from the European Dialysis and Transplant Association Registry.

This paper summarises the information given on the 1986 EDTA Registry centre questionnaire which was returned by 82% of the 2,065 known dialysis and transplant centres in 33 European countries. Information is given on the number of patients alive on haemodialysis according to the type of dialysis facilities available where the patient was receiving dialysis and the number of patients receiving special types of dialysis. The centre questionnaire also included questions on testing for HIV infection, serological evidence or symptoms of AIDS and the diagnosis of hepatitis B in patients and staff. The data given in response to these questions are presented together with data on the involvement of dietitians and social workers in the treatment of patients with end stage renal failure. Finally, information on transplant activity in Europe and the treatment policies of transplanting centres is provided.

AIDS Serodiagnosis↗

PubMed1998

The sensitivity and specificity of the caffeine-halothane contracture test: a report from the North American Malignant Hyperthermia Registry. The North American Malignant Hyperthermia Registry of MHAUS.

BACKGROUND: The caffeine-halothane contracture test (CHCT) is the only recognized laboratory test to diagnose malignant hyperthermia (MH). The authors report the results of their analysis of pooled data from the North American Malignant Hyperthermia Registry database to determine the sensitivity and specificity of the CHCT. METHODS: The MH Clinical Grading Scale was used to identify 32 case subjects who were "almost certain" to be MH susceptible based on clinical criteria alone. Their CHCT results were compared with those of a group of 120 control subjects considered to be at low risk for MH. Diagnostic thresholds of the CHCT were adjusted, and its component tests were combined to generate receiver operating characteristic curves. The maximal Youden index for each component test was chosen as the diagnostic threshold indicative of MH susceptibility. RESULTS: The highest sensitivity (97%; 95% CI, 84-100%) was achieved with a two-component test with thresholds of > or = 0.5 g contracture for 3% halothane, > or = 0.3 g contracture at 2 mM caffeine, or both, considered positive for MH. The test specificity was 78% (95% CI, 69-85%). The addition of other CHCT component tests did not improve CHCT sensitivity or specificity. CONCLUSION: The CHCT achieves high sensitivity and acceptable specificity as a clinical laboratory diagnostic test when it is performed according to published standards. However, it cannot be used as a screening test because of the low prevalence of MH in the general population.

Adult↗

PubMed1997

Trauma registry injury coding is superfluous: a comparison of outcome prediction based on trauma registry International Classification of Diseases-Ninth Revision (ICD-9) and hospital information system ICD-9 codes.

BACKGROUND: Trauma registries are an essential but expensive tool for monitoring trauma system performance. The time required to catalog patients' injuries is the source of much of this expense. Typically, 15 minutes of chart review per patient are required, which in a busy trauma center may represent 25% of a full-time employee. We hypothesized that International Classification of Disease-Ninth Revision (ICD-9) codes generated by the hospital information system (HI) would be similar to those coded by a dedicated trauma registrar (TR) and would be as accurate as TR ICD-9 codes in predicting outcome. METHODS: One thousand eight hundred twelve patients admitted to a Level I trauma center during 2 years had International Classification of Disease Injury Severity Scores (ICISS) calculated based on HI and TR ICD-9 codes. The relative predictive powers of these two ICISSs were then compared for every patient using Receiver Operator Characteristic Curve Area (ROC) and Hosmer Lemeshow Statistics. RESULTS: Eighty-nine percent of patients (1,608 of 1,812) had identical HI and TR ICISSs. Eleven patients' ICISSs differed by >0.1, and only two patients' scores differed by >0.2. ICISS proved to be a powerful predictor of outcome whether derived from HI (ROC = 0.884; 95% confidence interval (CI) = 0.850-0.917) or TR (ROC = 0.872; 95% CI = 0.837-0.908). Although these predictive powers were not significantly different (p = 0.076), the trend was for HI to perform better than TR. ISS calculated for the same data set using the MacKenzie dictionary proved significantly less predictive of outcome than either ICISS (ROC(MacKenzie) = 0.843; 95% CI = 0.792-0.884; p = 0.034). CONCLUSION: We conclude that in our hospital TR data on individual injuries can be replaced by HI data without loss of predictive power. ISS based on the MacKenzie dictionary should be abandoned because it is much less predictive of outcome than ICISS.

Adolescent↗

PubMed1998

Increased prevalence of abnormal immunoglobulin M, G, and A concentrations at clinical onset of insulin-dependent diabetes mellitus: a registry-based study. The Belgian Diabetes Registry.

In view of the reported association of insulin-dependent diabetes mellitus (IDDM) with viral infections, (non-) islet-specific immune changes, and partial immunodeficiencies, we used immunonephelometry to measure circulating levels of IgM, IgG, and IgA in a registry-based group of IDDM patients under age 40 years at clinical onset (n = 397) and in age-matched nondiabetic siblings (n = 316) and control subjects (n = 322). Overall, IgM and IgA concentrations were higher, and IgG concentrations lower, in patients than in control subjects or siblings (P < 0.001). In siblings, IgM concentrations were higher than in control subjects (P < 0.001). Using age-adjusted reference intervals, abnormal Ig concentrations were noted in 27% of the patients at onset versus only 10% of the siblings and 7% of the control subjects (P < 0.001). For onset between 20 and 40 years (n = 220), 30% of the patients presented either increased IgM levels (21%) or decreased IgG levels (11%). Both independent phenomena occurred regardless of diabetes-associated immune and genetic markers. In patients and siblings, IgM levels were positively correlated with pancreatic lipase activity. In diabetic children (0-9 years; n = 65), a subgroup presented increased IgA levels (15%) in association with the highest HLA DQ-linked genetic risk and elevated IgM levels. The changes in total Ig concentrations at onset were largely reversed under insulin therapy. They may reflect exposure to environmental triggers, such as viral infections, or to (relative) insulinopenia prior to clinical disease onset. Whatever their cause, different serum Ig levels exist in different age groups of recent-onset IDDM patients.

Adolescent↗

PubMed1999

Intestinal transplantation: 1997 report of the international registry. Intestinal Transplant Registry.

BACKGROUND: Small bowel transplantation is an evolving procedure. We reviewed the world experience since 1985 to determine the current status of this procedure. METHODS: All of the known intestinal transplant programs were invited to contribute to an international registry using a standardized report form. RESULTS: Thirty-three intestinal transplant programs provided data on 273 transplants in 260 patients who were transplanted on or before February 28, 1997. The number of procedures per year has increased at a linear rate since 1990, with 58 transplants performed in 1996. Two-thirds of the recipients were children or teenagers. The short gut syndrome was the most common indication for transplantation. The types of transplants included the small bowel with or without the colon (41%); the intestine and liver (48%); and multivisceral grafts (11%). The 1-year graft/patient survival for transplants performed after February 1995 was 55%/69% for intestinal grafts; 63%/66% for small bowel and liver grafts; and 63%/63% for multivisceral grafts. Transplants since 1991 and programs that had performed at least 10 transplants had significantly higher graft survival rates. Seventy-seven percent of the current survivors had stopped total parenteral nutrition (TPN) and resumed oral nutrition. CONCLUSIONS: Transplantation has become a lifesaving procedure for (1) patients with intestinal failure who cannot be maintained on total parenteral nutrution and (2) patients who require abdominal evisceration to completely remove locally aggressive tumors. The 5-year survival rate of intestinal transplantation with large series is comparable to lung transplantation.

Adolescent↗

PubMedDate not supplied

Alzheimer's disease in the NAS-NRC registry of aging twin veterans. II. Longitudinal findings in a pilot series. National Academy of Sciences. National Research Council Registry.

Over 3 years we followed 8 pairs of male twins one or both of whom had suspected Alzheimer's disease (AD) including 'mild/ambiguous' changes suggestive of incident AD. These pairs were screened in 1988 and 1989 from 339 pairs in the (US) National Academy of Sciences-National Research Council Registry (NASR) of aging veteran twins, then 61-72 years of age. Most of the suspected cases (10 of 12) had mild/ambiguous changes. Including these subjects, we had estimated the prevalence of AD in the NASR as about 2%. We now describe briefly the longitudinal evaluation of these 8 pairs. Only 1 of the 10 individuals with mild/ambiguous changes has progressed to show well-defined clinical symptoms of AD. Two others remain in their original research category, while 7 clearly do not have AD. Thus, we now estimate the 1988-1989 prevalence of AD in the NASR as 0.5%. These results contrast with other follow-up studies of mild cases from a university-based Alzheimer's clinic. We suggest that the contrasting findings reflect the nature of the samples studied, and we show that the present results are predicted by Bayesian reasoning.

Aged↗

PubMed1992

Multicenter experience with balloon mitral commissurotomy. NHLBI Balloon Valvuloplasty Registry Report on immediate and 30-day follow-up results. The National Heart, Lung, and Blood Institute Balloon Valvuloplasty Registry Participants.

BACKGROUND: Balloon mitral commissurotomy can increase mitral valve areas and reduce symptoms in selected patients with mitral stenosis. The National Heart, Lung, and Blood Institute Balloon Valvuloplasty Registry was organized to address concerns regarding differences in patient selection and technique and to report the current clinical outcome. METHODS AND RESULTS: In 24 cooperating centers, 738 patients had balloon mitral commissurotomy. Baseline clinical, echo Doppler, and cardiac catheterization data, procedure details, and hemodynamic and 30-day clinical outcome were reported. Overall, 81% of the patients were women (mean age, 54 +/- 15 years), and 24% had moderate or severe other valvular lesions. When single- and double-balloon procedures were compared, the final mitral valve area was larger (1.7 +/- 0.7 versus 2.0 +/- 0.8 cm2, p = 0.0009), increase in mitral regurgitation was similar (4% versus 12%, p = 0.08), and interatrial shunts occurred more frequently (2% versus 12%, p = 0.04) after double-balloon procedures. Increase in mitral valve area was weakly related to mitral valve morphology as assessed by an echo score (r = -0.15). Multivariate predictors of improved clinical status at 30 days were cases performed in larger-volume centers, baseline mitral valve area greater than 0.5 cm2, and age less than 70 years. At 30-day follow-up, 4% of the patients with completed procedures had mitral valve surgery, 3% had died, and 83% had their overall condition improved. Patients with mixed mitral stenosis or regurgitation and isolated mitral stenosis had a similar course, but fewer patients with multivalve disease became asymptomatic. CONCLUSIONS: Balloon mitral commissurotomy, as practiced in a broad range of experienced centers, produced significant short-term hemodynamic and clinical improvements. Balloon mitral commissurotomy can be considered an effective treatment option in patients with symptomatic mitral stenosis.

Adult↗

PubMed1995

The Behavior Rating Scale for Dementia of the Consortium to Establish a Registry for Alzheimer's Disease. The Behavioral Pathology Committee of the Consortium to Establish a Registry for Alzheimer's Disease.

OBJECTIVE: The purpose of the study was to develop a standardized instrument, the Behavior Rating Scale for Dementia, for rating psychopathology in patients with probable Alzheimer's disease and to conduct a multicenter pilot study of this instrument. METHOD: The rating scale was developed collaboratively on the basis of clinical experience and existing instruments. Items were scaled according to frequency of psychopathology and were administered to an informant who was familiar with the subject. The scale was administered in a standardized manner by trained examiners who had met predetermined certification standards. The study group consisted of 303 subjects with probable Alzheimer's disease who had undergone standardized clinical evaluations by the Consortium to Establish a Registry for Alzheimer's Disease. RESULTS: Subjects had an average of 15 problems rated as present in the preceding month. Wide variability in the nature of disturbances was found, with a number of items rated as present since the illness began but not in the past month. Interrater agreement was high. Factor analysis suggested eight preliminary factors that mapped onto clinically relevant domains: depressive features, psychotic features, defective self-regulation, irritability/agitation, vegetative features, apathy, aggression, and affective lability. CONCLUSIONS: The Behavior Rating Scale for Dementia provides a standardized, reliable measure that can be administered to caregivers of demented subjects. On the basis of the present study, the scale has been revised slightly. After additional studies in progress, the Behavior Rating Scale for Dementia will be available for general use in assessing a wide range of psychopathology in dementia.

Aged↗

PubMed1997

Quality control of spirometry testing in the registry for patients with severe alpha1-antitrypsin deficiency. alpha1-Antitrypsin Deficiency Registry Study Group.

As part of the multicenter National Heart, Lung, and Blood Institute registry of patients with severe deficiency of alpha1-antitrypsin with 1,129 enrollees, this report describes measures undertaken to achieve high-quality FEV1 measurements, the rates of satisfying reproducibility and acceptability criteria, and clinical features of participants unable to achieve reproducible FEV1 values at baseline. Spirograms were performed both before and after an inhaled bronchodilator in enrollees followed up at 37 participating clinical centers. Using a reproducibility criterion of < 100 mL or 5% (whichever greater), high reproducibility rates for FEV1 measurements at baseline were observed for both prebronchodilator (95.0% of 1,090 sessions) and postbronchodilator measurements (95.7% of 1,077 sessions). Using the more recently published reproducibility criterion of < or = 200 mL, reproducibility rates were even higher. Eighty-four percent of clinical centers submitted FEV1 values that satisfied reproducibility criteria for at least 90% of spirograms. Also, the mean coefficient of variation for prebronchodilator FEV1 values measured over serial visits separated by up to 9 months was 5.6% for participants with baseline FEV1 55 to 90% predicted. This degree of reproducibility is similar to that observed in the Lung Health Study. Rates of satisfying acceptability criteria for prebronchodilator spirograms were lower, almost universally (98% of tests) due to failure to achieve end-of-test criteria (which usually required 15 s of expiration in this population with mean FEV1 = 42.6+/-29.6% [SD] predicted). Multivariate logistic regression models show that clinical correlates of failure to achieve reproducible prebronchodilator FEV1 efforts include symptoms of chronic wheeze, chronic cough, and chronic phlegm, and the degree of airflow obstruction. We conclude that highly reproducible FEV1 measurements are achievable in a population with severe airflow obstruction despite the additional challenges posed by testing in multiple centers on a variety of spirometers. Furthermore, the difficulty of satisfying end-of-test criteria in a large cohort with severe airflow obstruction did not preclude achieving high rates of reproducibility for FEV1 measurements. Finally, our study confirms prior observations that failure to achieve reproducible efforts is associated with the presence of pulmonary symptoms and the degree of airflow obstruction. Thus, excluding patients with nonreproducible FEV1 efforts from epidemiologic studies would bias results by including only healthier participants.

Female↗

PubMed1999

Candidemia at selected Canadian sites: results from the Fungal Disease Registry, 1992-1994. Fungal Disease Registry of the Canadian Infectious Disease Society.

BACKGROUND: Candida species are important bloodstream pathogens that are being isolated with increasing frequency. Despite the availability of effective antifungal therapy, the mortality rate associated with Candida infection remains high. With the objective of describing the epidemiology of candidemia, the Canadian Infectious Disease Society conducted a study of candidemia in Canada. METHODS: Fourteen medical centres across Canada identified all patients with candidemia from March 1992 to February 1994 through blood culture surveillance for Candida spp. Patient-related data for invasive fungal infection were compiled retrospectively by chart review using a standardized data-recording form developed for the Fungal Disease Registry of the Canadian Infectious Disease Society. Cases of Candidemia were studied in relation to underlying medical conditions, predisposing factors, concurrent infection, antimicrobial agents, antifungal treatment and deaths. RESULTS: In total, 415 cases of candidemia were identified, 48 (11.6%) in children and 367 (88.4%) in adults. The causative pathogens were C. albicans in 286 cases (68.9%), C. parapsilosis in 43 (10.4%), C. glabrata in 34 (8.2%), C. tropicalis in 27 (6.5%) and other Candida species in 18 (4.3%); polymicrobial candidemia occurred in 7 cases (1.7%). The overall mortality rate was 46%, and the rate of deaths clinically related to candidemia was 19%. However, only 13 (27%) of the children died. A univariate analysis indicated that significant risk factors for death were age greater than 60 years, therapy for concomitant bacterial infection, stay in an intensive care unit, concurrent malignant disease, cytotoxic chemotherapy and granulocytopenia, although only age and stay in an intensive care unit emerged as significant risk factors in the multivariate analysis. After adjustment for other predictors of death, only infection with C. parapsilosis was associated with a lower mortality rate than infection with C. albicans. Treatment was given in 352 (84.8%) of cases. Amphotericin B was the preferred agent in 244 cases (69.3% of those treated); fluconazole was used in 101 cases (28.7%) and ketoconazole in 5 cases (1.4%). INTERPRETATION: Candidemia in Canada is caused predominantly by C. albicans. The mortality rate associated with candidemia is high, but it varies with the species of Candida and is lower in children than in adults. Age greater than 60 years and stay in an intensive care unit were the most significant risk factors for overall mortality.

Adult↗

PubMed1975

The 12th Report of the Human Renal Transplant Registry. Prepared by the Advisory Committee to the Renal Transplant Registry.

This report, the 12th, from the Renal Transplant Registry summarizes current results of kidney transplantation in man. There has been a trend toward increasing use of cadaveric sources for kidney transplantation. Results are summarized in five-year life-table analyses of recipient survival and graft function. Also, a summary of the results of special studies is provided. These include preparation of the recipient for transplantation by nephrectomy in various disease states, comparison of simple flushing with machine perfusion in cadaveric kidney storage, results of transplantation in the pediatric recipient, and the development of malignant neoplasm in graft recipients. A large study relating typing to graft function presents information at some variance from previous reports published in the United States.

Adolescent↗

PubMed1992

Zimbabwe National Cancer Registry: summary data 1986-1989. National Cancer Registry Advisory Committee.

The Zimbabwe National Cancer Registry began operation in 1986. Between 1986-1989, a total of 8 276 cases were identified. Among men of African descent, oesophageal (11.2 pc) and liver cancer (11.0 pc) were most common. Cervical cancer was by far the most common among women of African descent (34.5 pc). Among both males and females of non-African descent, skin cancers (other than melanoma) accounted for one-third of cancers followed by prostate cancer (7.7 pc) in males and breast cancer (18.5 pc) in females. These findings are comparable to earlier reports of the epidemiology of cancer in Zimbabwe.

Causality↗

PubMed2005

[Impact of reperfusion strategies on in-hospital outcome in ST-elevation myocardial infarction in a context of interhospital network: data from the prospective VENERE registry (VENEto acute myocardial infarction REgistry].

BACKGROUND: Primary angioplasty (pPCI) is the most effective reperfusion treatment of acute ST-elevation myocardial infarction (STEMI), but logistic- and organization-related problems could affect the outcome. The aim of this study was to investigate the in-hospital outcome according to reperfusion strategy in the Veneto Region cardiology network. METHODS: A treatment protocol, aimed to treat patients with high-risk STEMI by pPCI on-site or after transport, was developed and shared by the majority of cardiology departments in the Veneto Region. Data of all consecutive patients with STEMI were prospectively recorded during a 6-month period. RESULTS: 999 patients with symptom onset < 12 hours were admitted to the 28 participating hospitals: 860 were treated on-site and 139 were transferred from the admitting hospital to an interventional center for PCI. Overall, 82% of patients were treated with reperfusion therapy. Ten patients died immediately before any treatment could be initiated. In 170 patients who did not receive any reperfusion treatment, in 302 patients who received fibrinolysis (and eventually rescue PCI) and in 517 patients sent to pPCI, the following in-hospital outcome was observed respectively: mortality rate 10, 6.95 and 6.57%; reinfarction rate 0.6, 1 and 0.4%; incidence of stroke 1.7, 1.4 and 0.9%; the need for urgent revascularization procedure 6.5, 10 and 2.3%. After adjustment for confounding variables, the in-hospital occurrence of the combined events was significantly lower in patients treated with pP-CI (odds ratio 0.33, confidence interval 0.20-0.53, p < 0.01) as well as a trend for a reduced in-hospital mortality was observed (odds ratio 0.51, confidence interval 0.26-1.03, p = 0.06). CONCLUSIONS: In the VENERE registry, patients treated with pPCI had a better in-hospital outcome as compared to those treated with fibrinolytic strategy.

Aged↗

PubMedDate not supplied

Renal registries in the era of guidelines, standards and quality improvement. One view from the UK Renal Registry experience.

Over the past decade the UK Renal Registry has rehearsed the collection, analysis and presentation of a range of laboratory, as well as demographic, data from an increasing number of renal units. This has been accomplished by fully electronic means. The normalisation of disparate laboratory results to allow comparative audit remains a problem. The exercise has allowed a largely passive and intuitive exploration of the role that such data aggregation can play in a modern clinical context that is influenced by the Evidence Based Medicine movement and the development of Clinical Practice Guidelines, Standards and Clinical Performance Measures. To extend the data collection to clinical variables from these unselected patient groups, in order to explain as well as to describe clinical activity, is attractive but appears yet more challenging. These experiences can be used perhaps by the nephrological community to inform the further development of similar proposals in Europe, especially the concepts and structures required to link such information to the prospect of real clinical benefit.

Humans↗

PubMed1991

Occurrence of neoplasia in patients with rheumatoid arthritis enrolled in a DMARD Registry. Rheumatoid Arthritis Azathioprine Registry Steering Committee.

The Rheumatoid Arthritis Azathioprine Registry (RAAR) was established in 1982 to examine the safety of azathioprine (AZA) and other disease modifying agents (DMARD) in the treatment of RA. In yearly followup over the past 7 years, 20 malignant conditions have been reported in 530 DMARD treated adult patients with RA. Incidence density ratios (IDR) and standardized morbidity ratios (SMR) were calculated to assess cancer risk. For all cancers the SMR was 1.52 (95% CI 0.90-2.60). For men the SMR was 1.71 (95% CI 0.84-3.52); for women the SMR was 1.52 (95% CI 0.89-2.60). Adjusted for age, the IDR was highest in the 70-79-year-old study population (3.41). The age and sex adjusted SMR for lymphoproliferative disorders and myeloma was 8.05 (95% CI 3.30-20.81). The SMR for lung cancer (n = 6) was also increased (3.37; 95% CI 1.58-7.34). Compared with the general population, patients with RA requiring DMARD therapy may be at increased risk of malignancy, particularly lymphoproliferative disorders. The RAAR is an important prospective technique which will ultimately permit assessment of neoplasia risk by type and duration of DMARD therapy.

Adult↗

PubMed1989

Vascular surgery in southern Sweden--the first year experience of a vascular registry. Vascular Registry in Southern Sweden (VRISS).

A vascular registry was set up in southern Sweden covering all peripheral vascular procedures performed in a population of almost 2 million. During the first year 1569 procedures were registered including 30-day follow-up, making a frequency of 84 per 100,000 inhabitants with a considerable variation between counties, from 42 to 146 procedures per 100,000 inhabitants. The operations were performed by 127 different surgeons, but only nine surgeons performed more than 50 operations each. These surgeons participated in 52.6% of all procedures. The frequency of re-operation differed from 4.0 to 17.9% between hospitals. One month postoperatively 70% of the patients had returned home while 13.2% were still in hospital. Median length of stay was 8 days. Overall mortality was 7.9%. The outcome at 30 days for various procedures was comparable with that of other recent reports from specialised centres.

Adolescent↗

PubMed1989

Report from the International Bone Marrow Transplant Registry. Advisory Committee of the International Bone Marrow Transplant Registry.

The International Bone Marrow Transplant Registry (IBMTR) receives and analyses detailed information contributed by transplant teams at more than 175 institutions worldwide. This collaborative research effort has grown rapidly; there are now more than 8000 cases in the database. This is a summary of the current status of bone marrow transplantation in leukemia and severe aplastic anemia, a brief summary of key findings reported by the IBMTR during the past year, as well as studies planned for the coming year.

Anemia, Aplastic↗

PubMed1987

EDTA Registry Centre Survey, 1985. Report from the European Dialysis and Transplant Association Registry.

This paper summarises the information given on the 1985 EDTA Registry centre questionnaire which was returned by 82% of 1959 known dialysis and transplant units in 33 European countries. Trends in the use of different forms of renal replacement therapy are discussed, and attention drawn to the discrepancy between the EDTA centre and individual patient questionnaires as a source of demographic information on dialysis and transplantation. The results of special questions on dialyser re-use, dialysis equipment, AIDS, and hepatitis are presented, and information obtained from the special paediatric section of the centre questionnaire is also given.

Acquired Immunodeficiency Syndrome↗