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Registry Data (registry + data)
Kinds of Registry Data Selected AbstractsUncovering Symptom Progression History from Disease Registry Data with Application to Young Cystic Fibrosis PatientsBIOMETRICS, Issue 2 2010Jun Yan Summary The growing availability of various disease registry data has brought precious opportunities to epidemiologists to understand the natural history of the registered diseases. It also presents challenges to the traditional data analysis techniques because of complicated censoring/truncation schemes and temporal dynamics of covariate influences. In a case study of the Cystic Fibrosis Foundation Patient Registry data, we propose analyses of progressive symptoms using temporal process regressions, as an alternative to the commonly employed proportional hazards models. Two endpoints are considered, the prevalence of ever positive and currently positive for Pseudomonas aeruginosa (PA) infection in the lungs, which capture different aspect of the disease process. The analysis of ever PA positive via a time-varying coefficient model demonstrates the lack of fit, as well as the potential loss of information, in the standard proportional hazards analysis. The analysis of currently PA positive yields results that are clinically meaningful and have not previously been reported in the cystic fibrosis literature. Our analyses demonstrate that prenatal/neonatal screening results in lower prevalence of PA infection compared to traditional diagnosis via signs and symptoms, but this benefit attenuates with age. Calendar years of diagnosis also affect the risk of PA infection; patients diagnosed in more recent cohort show higher prevalence of ever PA positive but lower prevalence of currently PA positive. [source] Underdosing of Midazolam in Emergency Endotracheal IntubationACADEMIC EMERGENCY MEDICINE, Issue 4 2003Mark J. Sagarin MD Objectives: To determine whether midazolam, when used as an induction agent for emergency department (ED) rapid-sequence intubation (RSI), is used in adequate and recommended induction doses (0.1 to 0.3 mg/kg), and to compare the accuracy of the dosing of midazolam for ED RSI with the accuracy of dosing of other agents. Methods: The authors conducted a systematic query of a prospectively collected database of ED intubations using the National Emergency Airway Registry data, gathered in 11 participating EDs over a 16-month period. A data form completed at the time of emergency department intubation (EDI) enabled analysis of patients' ages, weights, and indications for EDI, as well as the techniques and drugs used to facilitate EDI. Data were analyzed to determine whether midazolam is used in recommended doses during RSI. Patients intubated with midazolam alone were compared with patients who received other induction agents for RSI. Results: Of 1,288 patients entered in the study, 1,023 (79%) underwent RSI. Of the 888 RSI patients with an age recorded, midazolam was used as the sole induction agent in 140 (16%). The mean (±SD) dosages of midazolam used in RSI were 2.6 (±1.7) mg in children (age , 18) and 3.7 (±2.5) mg in adults (age ,19); the mean (±SD) dosages by weight were 0.08 (±0.04) mg/kg in children and 0.05 (±0.03) mg/kg in adults. More than half (56%) of the children, and nearly all (92%) of the adults, received dosages lower than the minimum recommended dosage (0.1 mg/kg). Of patients who received barbiturates, only 21% of children and 21% of adults received a dose lower than the minimum recommended. When combined with another induction agent, midazolam was dosed similarly to when it was used alone: mean adult doses were 3.1 (±1.2) mg and 0.04 (±0.02) mg/kg. Conclusions: Underdosing of midazolam during ED RSI is frequent, and appears to be related to incorrect dosage selection, rather than to a deliberate intention to reduce the dose used. [source] Multivessel Off-Pump Coronary Artery Bypass Grafting Can Be Taught to Trainee SurgeonsJOURNAL OF CARDIAC SURGERY, Issue 5 2003David Jenkins F.R.C.S. The purpose of this study was to address the reproducibility of the OPCAB in a unit where this technique is used extensively. Methods: Registry data, notes, and charts of 64 patients who were operated on by four trainee cardiac surgeons over a period of thirteen months at Harefield Hospital, were reviewed retrospectively. These trainees were part of an accredited training program for cardiothoracic training and were trained by a single consultant trainer in a cardiac unit after it had an established recent experience in performing nonselective OPCAB for all in-coming patients. Five (7.8%) patients (with 17 distal anastomoses) consented and underwent early postoperative angiography to check the quality of the grafts and anastomoses. Results: The mean age of the study patients was 65.6 and the mean Parsonnet score was 9.4. There was a mean of 2.9 grafts per patient and circumflex territory anastomoses were performed in 48 (75%) patients. No operation required conversion to Cardiopulmonary Bypass (CPB). Angiography of the five patients revealed 17 satisfactory (100%) distal anastomoses. Conclusion: With appropriate training, it is possible for trainees to learn OPCAB and perform multivessel revascularization in relatively high-risk patients with good results. [source] Lessons learned from the Oklahoma Thrombotic Thrombocytopenic Purpura-Hemolytic Uremic Syndrome RegistryJOURNAL OF CLINICAL APHERESIS, Issue 4 2008James N. George Abstract The Oklahoma TTP-HUS Registry provides a complete community perspective of thrombotic thrombocytopenic purpura (TTP). This is possible because plasma exchange is the essential treatment for TTP and the Oklahoma Blood Institute provides all plasma exchange procedures for a region encompassing most of the State, including 58 of Oklahoma's 77 counties. The Registry is an inception cohort of consecutive patients for whom plasma exchange treatment was requested for a diagnosis of either TTP or hemolytic uremic syndrome (HUS). All 382 patients identified from January 1, 1989 to December 31, 2007 have consented to be enrolled. Complete follow-up is available for 380 of 382 patients. Patients are described both by clinical categories, related to their associated conditions and clinically apparent etiologies, and by the presence of severe ADAMTS13 deficiency. ADAMTS13 activity has been measured on 235 (93%) of 254 patients since 1995. Registry data have provided new perspectives on the definition and diagnoses of these syndromes as well as their outcomes. Long-term follow-up has documented that relapse is common among patients with ADAMTS13 deficiency but rarely occurs in patients without ADAMTS13 deficiency. Long-term follow-up has also documented persistent abnormalities of health-related quality-of-life and cognitive function. In addition to providing new perspectives on the natural history of these syndromes, The Oklahoma TTP-HUS Registry provides a support group for our patients, information about evaluation and management for community physicians, and a resource for research and educational programs. J. Clin. Apheresis, 2008. © 2008 Wiley-Liss, Inc. [source] Bridging the gap between evidence and practice in acute decompensated heart failure managementJOURNAL OF HOSPITAL MEDICINE, Issue S6 2008FACP, Franklin A. Michota Jr MD Abstract Registry data indicate a gap between evidence-based guidelines and current management of patients with acute decompensated heart failure (ADHF). Bridging this gap is crucial given the frequency and cost of hospitalization for this disorder. Patients with ADHF require rapid assessment to determine appropriate treatment location and initial therapy. Patients with impending respiratory failure or cardiogenic shock should be managed in an intensive care setting, patients with congestion that is expected to require prolonged intravenous therapy should be admitted to the hospital, and patients with congestion that is likely to respond within 12,24 hours can be managed in an observation unit. Clinical status should guide selection of initial therapy. Initially, therapeutic response should be assessed every couple of hours. Once effective acute therapy has been established, it is important to implement strategies to improve long-term outcomes. These strategies include ensuring that care complies with established core performance measures, providing patient education in a manner suited to ensure comprehension and retention, and arranging for appropriate outpatient follow-up, ideally in a comprehensive heart failure disease management program. The purpose of this review is (1) to examine evidence-based guidelines for the treatment of ADHF, (2) to present a practical algorithm for patient assessment and treatment derived from these guidelines and personal experience, and (3) to discuss systems to enhance the ultimate transition of patient care from the inpatient to outpatient setting. Journal of Hospital Medicine 2008;3(Suppl 6):S7,S15. ©2008 Society of Hospital Medicine. [source] Interpreting incidence trends for treated end-stage renal disease: Implications for evaluating disease control in AustraliaNEPHROLOGY, Issue 4 2004JOHN H STEWART SUMMARY: Background: Five sources of change modify trends in incidence of treated end-stage renal disease (ESRD): (i) demography; (ii) disease control, comprising prevention and treatment of progressive kidney disease; (iii) competing risks, which encompass dying from untreated uraemia or non-renal comorbidity; (iv) lead-time bias; and (v) classification bias. Thus, rising crude incidence of treated ESRD may conceal effective disease control when there has been demographic change, lessening competing risks, or the introduction of bias. Methods: Age-specific incidences of treated ESRD in Australia were calculated from Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry data by indigenous/non-indigenous status (all causes) and by primary renal disease (non-indigenous only) for two successive decades, 1982,1991 and 1992,2001. Results: We postulate that less competing risks explained much of the increase in treated ESRD in the elderly and Indigenous Australians. The increase in glomerulonephritic ESRD in non-indigenous Australians could be ascribed mainly to immigration from non-European countries. There was no significant change in incidence of treated ESRD in Indigenous or non-indigenous persons aged less than 25 years, in non-indigenous persons aged 25,64 years for ESRD caused by hereditary polycystic disease or hypertension, or in type 1 diabetics aged over 55 years. End-stage renal disease from analgesic nephropathy had declined. The increase in treated ESRD caused by type 2 diabetic nephropathy appeared to be multifactorial. Lead-time/length bias and less competing risks may have concealed a small favourable trend in other primary renal diseases. Conclusion: Whether recent disease control measures have had an impact on incidence of treated ESRD is not yet certain, but seems more likely than implied by previous reports. [source] Pseudomonas aeruginosa and other predictors of mortality and morbidity in young children with cystic fibrosis,PEDIATRIC PULMONOLOGY, Issue 2 2002Julia Emerson MD Abstract We conducted a registry-based study to determine prognostic indicators of 8-year mortality and morbidity in young children with cystic fibrosis (CF). Patients ages 1,5 years from the 1990 U.S. Cystic Fibrosis Foundation (CFF) National Patient Registry served as the study cohort (N,=,3,323). Registry data provided information on baseline characteristics in 1990, 8-year mortality, and clinical outcomes in 1998. P. aeruginosa respiratory infection was found to be a major predictor of morbidity and mortality. The 8-year risk of death was 2.6 times higher in patients who had respiratory cultures positive for P. aeruginosa in 1990 (95% confidence interval 1.6, 4.1) than in children without P. aeruginosa in their respiratory cultures. Culture-positive patients in 1990 also had a significantly lower percent predicted forced expiratory volume in 1 sec (FEV1) and weight percentile at follow-up, and they had an increased risk of continued P. aeruginosa respiratory infection and hospitalization for acute respiratory exacerbation in 1998. Among the other predictors of increased morbidity and mortality were lower baseline weight percentiles and number of CF-related hospitalizations during the baseline year. These findings confirm reports from previous smaller studies of outcomes among young children with CF, and highlight the potential to decrease the morbidity and mortality of young patients with CF through early intervention. Pediatr Pulmonol. 2002; 34:91,100. © 2002 Wiley-Liss, Inc. [source] Using the International Gaucher Disease Registry data: Can we devise a virtuous circle for treated patients?,AMERICAN JOURNAL OF HEMATOLOGY, Issue 12 2008Deborah Elstein No abstract is available for this article. [source] Identifying High Risk Groups and Quantifying Absolute Risk of Cancer After Kidney Transplantation: A Cohort Study of 15 183 RecipientsAMERICAN JOURNAL OF TRANSPLANTATION, Issue 9 2007A. C. Webster Transplant recipients have increased cancer risk, but data on risk variation across different patient groups are sparse. Rates and standardized rate ratios (SRR) of cancer (all sites, excluding nonmelanocytic skin and lip cancer) compared to the general population were calculated, using Australia and New Zealand Dialysis and Transplant Registry data. Within the transplant population, risk factors were identified (hazard ratios: HR; 95% CI) and absolute risk estimated for recipient groups. A total of 1642 (10.8%) of 15 183 recipients developed cancer. Risk was inversely related to age (SRR 15,30 children, 2 if >65 years). Females aged 25,29 had rates equivalent to women aged 55,59 from the general population. Age trend for lymphoma, colorectal and breast risk was similar; melanoma showed less variability across ages, prostate showed no risk increase. Within the transplanted population, risk was affected by age differently for each sex (p = 0.007), elevated by prior malignancy (HR 1.40; 1.03,1.89), white race (HR 1.36; 1.12,1.89), but reduced by diabetic end-stage kidney disease (ESKD) (HR 0.67; 0.50,0.89). Cancer rates in kidney recipients are similar to nontransplanted people 20,30 years older, but absolute risk differs across patient groups. Men aged 45,54 surviving 10 years have cancer risks varying from 1 in 13 (non-white, no prior cancer, diabetic ESKD) to 1 in 5 (white, prior cancer, other ESKD). [source] Epidemiological Approach to Identifying Genetic Predispositions for Atypical Hemolytic Uremic SyndromeANNALS OF HUMAN GENETICS, Issue 1 2010Maren Sullivan Summary Atypical hemolytic uremic syndrome (aHUS) is caused by several susceptibility genes. A registry including analyses of susceptibility genes, familial occurrence and genotype-phenotype correlation should provide classification insights. Registry data of 187 unrelated index patients included age at onset, gender, family history, relapse of aHUS and potentially triggering conditions. Mutation analyses were performed in the genes CFH, CD46 and CFI and in the six potential susceptibility genes, FHR1 to FHR5 and C4BP. Germline mutations were identified in 17% of the index cases; 12% in CFH, 3% in CD46 and 2% in CFI. Twenty-nine patients had heterozygous mutations and one each had a homozygous and compound heterozygous mutation. Mutations were not found in the genes FHR1-5 and C4BP. In 40% of the patients with familial HUS a mutation was found. Penetrance by age 45 was 50% among carriers of any mutation including results of relatives of mutation-positive index cases. The only risk factor for a mutation was family history of HUS (p = 0.02). Penetrance of aHUS in carriers of mutations is not complete. Occurrence of homo- and heterozygous mutations in the same gene suggests that the number of necessary DNA variants remains unclear. Among clinical information only familial occurrence predicts a mutation. [source] Exploring the epidemiological characteristics of cancers of unknown primary site in an Australian population: implications for research and clinical careAUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH, Issue 4 2008Colin Luke Abstract Objectives: To investigate incidence, mortality and case survival trends for cancer of unknown primary site (CUP) and consider clinical implications. Method: South Australian Cancer Registry data were used to calculate age-standardised incidence and mortality rates from 1977 to 2004. Disease-specific survivals, socio-demographic, histological and secular predictors of CUP, compared with cancers of known primary site, and of CUP histological types, using multivariable logistic regression were investigated. Results: Incidence and mortality rates increased approximately 60% between 1977-80 and 1981-84. Rates peaked in 1993-96. Male to female incidence and mortality rate ratios approximated 1.3:1. Incidence and mortality rates increased with age. The odds of unspecified histological type, compared with the more common adenocarcinomas, were higher for males than females, non-metropolitan residents, low socio-economic areas, and for 1977-88 than subsequent diagnostic periods. CUP represented a higher proportion of cancers in Indigenous patients. Case survival was 7% at 10 years from diagnosis. Factors predictive of lower case survival included older age, male sex, Indigenous status, lower socio-economic status, and unspecified histology type. Conclusion: Results point to poor CUP outcomes, but with a modest improvement in survival. The study identifies socio-demographic groups at elevated risk of CUP and of worse treatment outcomes where increased research and clinical attention are required. [source] Uncovering Symptom Progression History from Disease Registry Data with Application to Young Cystic Fibrosis PatientsBIOMETRICS, Issue 2 2010Jun Yan Summary The growing availability of various disease registry data has brought precious opportunities to epidemiologists to understand the natural history of the registered diseases. It also presents challenges to the traditional data analysis techniques because of complicated censoring/truncation schemes and temporal dynamics of covariate influences. In a case study of the Cystic Fibrosis Foundation Patient Registry data, we propose analyses of progressive symptoms using temporal process regressions, as an alternative to the commonly employed proportional hazards models. Two endpoints are considered, the prevalence of ever positive and currently positive for Pseudomonas aeruginosa (PA) infection in the lungs, which capture different aspect of the disease process. The analysis of ever PA positive via a time-varying coefficient model demonstrates the lack of fit, as well as the potential loss of information, in the standard proportional hazards analysis. The analysis of currently PA positive yields results that are clinically meaningful and have not previously been reported in the cystic fibrosis literature. Our analyses demonstrate that prenatal/neonatal screening results in lower prevalence of PA infection compared to traditional diagnosis via signs and symptoms, but this benefit attenuates with age. Calendar years of diagnosis also affect the risk of PA infection; patients diagnosed in more recent cohort show higher prevalence of ever PA positive but lower prevalence of currently PA positive. [source] Original article: The prevalence of Barrett's esophagus in the US: estimates from a simulation model confirmed by SEER dataDISEASES OF THE ESOPHAGUS, Issue 6 2010T. J. Hayeck SUMMARY Barrett's esophagus (BE) is the precursor and the biggest risk factor for esophageal adenocarcinoma (EAC), the solid cancer with the fastest rising incidence in the US and western world. Current strategies to decrease morbidity and mortality from EAC have focused on identifying and surveying patients with BE using upper endoscopy. An accurate estimate of the number of patients with BE in the population is important to inform public health policy and to prioritize resources for potential screening and management programs. However, the true prevalence of BE is difficult to ascertain because the condition frequently is symptomatically silent, and the numerous clinical studies that have analyzed BE prevalence have produced a wide range of estimates. The aim of this study was to use a computer simulation disease model of EAC to determine the estimates for BE prevalence that best align with US Surveillance Epidemiology and End Results (SEER) cancer registry data. A previously developed mathematical model of EAC was modified to perform this analysis. The model consists of six health states: normal, gastroesophageal reflux disease (GERD), BE, undetected cancer, detected cancer, and death. Published literature regarding the transition rates between these states were used to provide boundaries. During the one million computer simulations that were performed, these transition rates were systematically varied, producing differing prevalences for the numerous health states. Two filters were sequentially applied to select out superior simulations that were most consistent with clinical data. First, among these million simulations, the 1000 that best reproduced SEER cancer incidence data were selected. Next, of those 1000 best simulations, the 100 with an overall calculated BE to Detected Cancer rates closest to published estimates were selected. Finally, the prevalence of BE in the final set of best 100 simulations was analyzed. We present histogram data depicting BE prevalences for all one million simulations, the 1000 simulations that best approximate SEER data, and the final set of 100 simulations. Using the best 100 simulations, we estimate the prevalence of BE to be 5.6% (5.49,5.70%). Using our model, an estimated prevalence for BE in the general population of 5.6% (5.49,5.70%) accurately predicts incidence rates for EAC reported to the US SEER cancer registry. Future clinical studies are needed to confirm our estimate. [source] Overdose deaths following previous non-fatal heroin overdose: Record linkage of ambulance attendance and death registry dataDRUG AND ALCOHOL REVIEW, Issue 4 2009MARK A. STOOVÉ Abstract Introduction and Aims. Experiencing previous non-fatal overdoses have been identified as a predictor of subsequent non-fatal overdoses; however, few studies have investigated the association between previous non-fatal overdose experiences and overdose mortality. We examined overdose mortality among injecting drug users who had previously been attended by an ambulance for a non-fatal heroin overdose. Design and Methods. Using a retrospective cohort design, we linked data on non-fatal heroin overdose cases obtained from ambulance attendance records in Melbourne, Australia over a 5-year period (2000,2005) with a national death register. Results. 4884 people who were attended by ambulance for a non-fatal heroin overdose were identified. One hundred and sixty-four overdose deaths occurred among this cohort, with an average overdose mortality rate of 1.20 per 100 person-years (95% CI, 1.03,1.40). Mortality rate decreased 10-fold after 2000 coinciding with widely reported declines in heroin availability. Being male, of older age (>35 years) and having been attended multiple times for previous non-fatal overdoses were associated with increased mortality risk. Discussion and Conclusions. As the first to show a direct association between non-fatal overdose and subsequent overdose mortality, this study has important implications for the prevention of overdose mortality. This study also shows the profound effect of macro-level heroin market dynamics on overdose mortality.[Stoové MA, Dietze PM, Jolley D. Overdose deaths following previous non-fatal heroin overdose: Record linkage of ambulance attendance and death registry data. Drug Alcohol Rev 2009;28:347,352] [source] Lobbying with conflicting interests: Norwegian local-central relationsEUROPEAN JOURNAL OF POLITICAL RESEARCH, Issue 2 2008LEIF HELLAND A total of 239 interactions are studied. Survey responses by a large number of voters and politicians, as well as registry data on fiscal standing, demographics and elections are utilised. Two of the main predictions of the costly lobbying model gain support in the data. The probability of obtaining substantial discretionary funding from the central level increases: with decreasing conflict of interest between local and central politicians; and with the lobbying cost incurred by local politicians. For a given conflict and cost, however, the rate of lobbying success depends crucially on structural characteristics of the municipality. In particular, the success rate is significantly higher for poor municipalities located in national electoral districts with many seats per voter than for rich municipalities located in districts with few seats per voter. [source] Current challenges of pharmacovigilance in bleeding disorders: converting the burden to benefitHAEMOPHILIA, Issue 2 2010R. LASSILA Summary., Safety surveillance studies have proven essential in research and development of new biological therapies for bleeding disorders as well as other diseases. Although product safety regarding HIV, hepatitis, and other blood-borne infections is currently excellent, potential new infectious agents require continued vigilant monitoring. Inhibitor development is the most common serious side effect of haemophilia replacement therapy. Several aetiological factors associated with inhibitors have been identified, but their true impact is still largely unknown. Moreover, whether plasma-derived and recombinant factor products differ in their immunogenic profiles is an unresolved issue. Coagulation factor products under development and those currently on the market require uniform, long-term surveillance. The European Haemophilia Safety Surveillance (EUHASS) project was recently established to meet these goals. The pharmaceutical industry and clinicians face common challenges complying with these requirements. In rare diseases like haemophilia, obtaining adequate patient numbers poses a challenge. Another challenge is a lack of methods for assessing disease severity, a surprising deficiency in the era of modern medical and laboratory technology. National and international registries can be used to gather required safety surveillance information. Simultaneously, clinicians benefit from well-organized registry data in their daily practice and harmonize the quality of comprehensive haemophilia care by homogeneous follow-up platforms. Experience with such registries comes, for example, from Europe (PEDNET), the USA (CDC/UDC), the UK (UKHCDO), and Sweden (Malmö). It is important to commit to future pharmacovigilance efforts, aiming at high-quality safety surveillance programmes at both the pharmaceutical research community and clinical levels. [source] Evaluation of Three Algorithms to Identify Incident Breast Cancer in Medicare Claims DataHEALTH SERVICES RESEARCH, Issue 5 2007Heather T. Gold Objective. To test the validity of three published algorithms designed to identify incident breast cancer cases using recent inpatient, outpatient, and physician insurance claims data. Data. The Surveillance, Epidemiology, and End Results (SEER) registry data linked with Medicare physician, hospital, and outpatient claims data for breast cancer cases diagnosed from 1995 to 1998 and a 5 percent control sample of Medicare beneficiaries in SEER areas. Study Design. We evaluate the sensitivity and specificity of three algorithms applied to new data compared with original reported results. Algorithms use health insurance diagnosis and procedure claims codes to classify breast cancer cases, with SEER as the reference standard. We compare algorithms by age, stage, race, and SEER region, and explore via logistic regression whether adding demographic variables improves algorithm performance. Principal Findings. The sensitivity of two of three algorithms is significantly lower when applied to newer data, compared with sensitivity calculated during algorithm development (59 and 77.4 percent versus 90 and 80.2 percent, p<.00001). Sensitivity decreases as age increases, and false negative rates are higher for cases with in situ, metastatic, and unknown stage disease compared with localized or regional breast cancer. Substantial variation also exists by SEER registry. There was potential for improvement in algorithm performance when adding age, region, and race to an indicator variable for whether the algorithm determined a subject to be a breast cancer case (p<.00001). Conclusions. Differential sensitivity of the algorithms by SEER region and age likely reflects variation in practice patterns, because the algorithms rely on administrative procedure codes. Depending on the algorithm, 3,5 percent of subjects overall are misclassified in 1998. Misclassification disproportionately affects older women and those diagnosed with in situ, metastatic, or unknown-stage disease. Algorithms should be applied cautiously to insurance claims databases to assess health care utilization outside SEER-Medicare populations because of uneven misclassification of subgroups that may be understudied already. [source] The ,oestrogen hypothesis', where do we stand now?,INTERNATIONAL JOURNAL OF ANDROLOGY, Issue 1 2003Richard M. Sharpe Summary The original ,oestrogen hypothesis' postulated that the apparent increase in human male reproductive developmental disorders (testis cancer, cryptorchidism, hypospadias, low sperm counts) might have occurred because of increased oestrogen exposure of the human foetus/neonate; five potential routes of exposure were considered. This review revisits this hypothesis in the light of the data to have emerged since 1993. It addresses whether there is a secular increasing trend in the listed disorders and highlights the limitations of available data and how these are being addressed. It considers whether new data has emerged to support the suggestion that increased oestrogen exposure could cause these abnormalities and reviews new data on potential routes via which such increased exposure could have occurred. Secular trends: The disorders listed above are now considered to represent a syndrome of disorders (testicular dysgenesis syndrome, TDS) with a common origin in foetal life. Testicular cancer has increased in incidence in Caucasian men worldwide and lifetime risk is 0.3,0.8%. Secular trends in cryptorchidism are unclear but it is by far the commonest (2,4% at birth) congenital abnormality in either sex. Secular trends for hypospadias are not robust, although most studies suggest a progressive increase; registry data probably under-estimates incidence, but based on this data hypospadias is the second most common (0.3,0.7% at birth) congenital malformation. Retrospective analyses of sperm count data show a global downward trend but this is inconclusive , prospective studies using standardized methodology show significant differences between countries and very low sperm counts in the youngest cohort of men. For all disorders, other then testis cancer, standardized prospective studies are the best way forward and are in progress across Europe. Oestrogen effects: Evidence that foetal exposure to oestrogens can induce the above disorders has strengthened. New pathways via which such changes could be induced have been identified, including suppression of testosterone production by the foetal testis, suppression of androgen receptor expression and suppression of insulin-like factor-3 (InsL3) production by foetal Leydig cells. Other evidence suggests that the balance between androgen and oestrogen action may be important in induction of reproductive tract abnormalities. Oestrogen exposure: Although many new environmental oestrogens have been identified, their uniformly weak oestrogenicity excludes the possibility that they could induce the above disorders. However, emerging data implicates various environmental chemicals in being able to alter endogenous levels of androgens (certain phthalates) and oestrogens (polychlorinated biphenyls, polyhalogenated hydrocarbons), and the former have been shown to induce a similar collection of disorders to TDS. Other mechanisms via which increased fetal exposure to pregnancy oestrogens might occur (increasing trend in obesity, dietary changes) are also discussed. [source] Risk of cancer among children of cancer patients,a nationwide study in FinlandINTERNATIONAL JOURNAL OF CANCER, Issue 5 2010Laura-Maria S. Madanat-Harjuoja Abstract Cancer treatments have the potential to cause germline mutations that might increase the risk of cancer in the offspring of former cancer patients. This risk was evaluated in a population-based study of early onset cancer patients in Finland. Using the nationwide registry data, 26,331 children of pediatric and early onset cancer patients (diagnosed under age 35 between 1953 and 2004) were compared to 58,155 children of siblings. Cancer occurrence among the children was determined by linkage with the cancer registry, and the standardized incidence ratios (SIRs) were calculated comparing the observed number of cancers with that expected, based on rates in the general population of Finland. Among the 9,877 children born after their parent's diagnosis, cancer risk was increased (SIR 1.67; 95% CI 1.29,2.12). However, after removing those with hereditary cancer syndromes, this increase disappeared (SIR 1.03; 95% CI 0.74,1.40). The overall risk of cancer among the offspring of siblings (SIR 1.07; 95% CI 0.94,1.21) was the same as among the offspring of the patients with nonhereditary cancer. Risk of cancer in offspring, born before their parents cancer diagnosis, was elevated (SIR 1.37, 95% CI 1.20-1.54), but removing hereditary syndromes resulted in a diminished and nonsignificant association (SIR 1.08, 95% CI 0.93-1.25). This study shows that offspring of cancer patients are not at an increased risk of cancer except when the patient has a cancer-predisposing syndrome. These findings are directly relevant to counseling cancer survivors with regard to family planning. [source] Impact of the post-World War II generation on intensive care needs in NorwayACTA ANAESTHESIOLOGICA SCANDINAVICA, Issue 4 2010J. H. LAAKE Background: A high birth rate during the first two decades following World War II has increased the proportion of elderly people in present-day society and, consequently, the demand for health-care services. The impact on intensive care services may become dramatic because the age distribution of critically ill patients is skewed towards the elderly. We have used registry data and population statistics to forecast the demand for intensive care services in Norway up until the year 2025. Methods: Data collected by the Norwegian intensive care registry (NIR), showing the age distribution in Norwegian intensive care units (ICU) during the years 2006 and 2007, were used with three different Norwegian prognostic models of population growth for the years 2008,2025 to compute the expected increase in intensive care unit bed-days (ICU bed-days). Results: The elderly were overrepresented in Norwegian ICUs in 2006,2007, with patients from 60 to 79 years of age occupying 44% of ICU bed-days. Population growth from 2008 to 2025 was estimated to be from 11.1 to 26.4%, depending on the model used. Growth will be much larger in the age group 60,79 years. Other factors kept unchanged, this will result in an increase in the need for intensive care (ICU bed-days) of between 26.1 and 36.9%. Conclusion: The demand for intensive care beds will increase markedly in Norwegian hospitals in the near future. This will have serious implications for the planning of infrastructure, education of health care personnel, as well as financing of our health care system. [source] The Reach of the Disposition Effect: Large Sample Evidence Across Investor Classes,INTERNATIONAL REVIEW OF FINANCE, Issue 1-2 2006Philip Brown ABSTRACT We examine detailed daily Australian Stock Exchange share registry data for investors in IPO and index stocks between 1995 and 2000 and find that the ,disposition effect,' investors' reluctance to crystallize losses and relative eagerness to realize gains, is pervasive across investor classes. However, traders instigating larger investments tend to be affected less by the disposition bias. Our novel findings include that (a) the disposition effect ameliorates over time, being undetectable from around 200 trading days after purchase, (b) the ,house money' effect tempers the disposition effect, (c) shareholder loyalty schemes also partially offset investors' relative preference for selling winning stocks, and (d) the reversal of the disposition effect in June (the last month of the Australian tax year) does not occur among investors unable to take advantage of tax shields. In line with earlier research, our results support a tax-related explanation for the June effect rather than window dressing or momentum explanations. Finally, we confirm Odean's finding that the disposition effect is not driven by diversification motives, or by higher transaction costs associated with lower-priced stocks. [source] Validity of registry data: Agreement between cancer records in an end-stage kidney disease registry (voluntary reporting) and a cancer register (statutory reporting)NEPHROLOGY, Issue 4 2010ANGELA C WEBSTER ABSTRACT: Aims: End-stage kidney disease registries inform outcomes and policy. Data quality is crucial but difficult to measure objectively. We assessed agreement between incident cancer reported to the Australian and New Zealand Dialysis and Transplant Registry (ANZDATA) and to the Central Cancer Registry (CCR) in New South Wales. Methods: ANZDATA records were linked to CCR using probabilistic matching. We calculated agreement between registries for patients with ,1 cancers, all cancers and site-specific cancer using the kappa statistic (,). We investigated cases where records disagreed and compared estimates of cancer risk based either on ANZDATA or on CCR using standardized incidence ratios (indirect standardization by age, sex and calendar year). Results: From 1980 to 2001, 9453 residents had dialysis or transplantation. ANZDATA recorded 867 cancers in 779 (8.2%) registrants; CCR 867 cancers in 788 (8.3%). ANZDATA recorded 170 patients with cancer that CCR did not, CCR recorded 179 patients that ANZDATA did not (, = 0.76). ANZDATA had sensitivity 77.3% (confidence interval (CI) 74.2,80.2), specificity 98.1% (CI 97.7,98.3) if CCR records were regarded as the reference standard. Agreement was similar for diagnoses while receiving dialysis (, = 0.78) or after transplantation (, = 0.79), but varied by cancer type. Agreement was poorest for melanoma (, = 0.61) and myeloma (, = 0.47) and highest for lymphoma (, = 0.80), leukaemia (, = 0.86) and breast cancer (, = 0.85). Artefact accounted for 20.8% of the non-concordance but error and misclassification did occur in both registries. Estimates of cancer risk based on ANZDATA or CCR records did not differ in any important way. Conclusion: Agreement of cancer records between both registries was high and differences largely explicable. It is likely that both ANZDATA and CCR have some inaccuracies, for reasons that are now more explicit, with themes similar to those likely to be experienced by other registries. [source] Review article: Use of renal registry data for research, health-care planning and quality improvement: What can we learn from registry data in the Asia,Pacific region?NEPHROLOGY, Issue 8 2008TECK-ONN LIM SUMMARY: We review renal registry data from the Asia,Pacific region with an emphasis on their uses in health care and in dialysis care in particular. The review aims to demonstrate the information value of registry data. While renal registry provides a useful data resource for epidemiological research, there are severe methodological limitations in its application for analytical or therapeutic research. However, it is the use of renal registry data for public health and health-care management purposes that registry really comes into its own, and it is primarily for these that governments have invested in national patient and disease registries. We apply data from several renal registries in the Asia,Pacific region to illustrate its wide application for planning dialysis services, for evaluating dialysis practices and health outcomes, with a view to improving the quality of dialysis care. In the course of preparing the review, we have found that the quality and accessibility of renal registry data were highly variable across the region. Given the value of renal registry, every country in the Asia,Pacific region should establish one or should ensure that their current registries are better resourced and developed. Greater data sharing and collaboration among registries in the region could help advance the nephrology to serve our patients better. [source] Anonymous non-response analysis in the ABCD cohort study enabled by probabilistic record linkagePAEDIATRIC & PERINATAL EPIDEMIOLOGY, Issue 3 2009M. Tromp Summary Selective non-response is an important threat to study validity as it can lead to selection bias. The Amsterdam Born Children and their Development study (ABCD-study) is a large cohort study addressing the relationship between life style, psychological conditions, nutrition and sociodemographic background of pregnant women and their children's health. Possible selective non-response and selection bias in the ABCD-study were analysed using national perinatal registry data. ABCD-study data were linked with national perinatal registry data by probabilistic medical record linkage techniques. Differences in the prevalence of relevant risk factors (sociodemographic and care-related factors) and birth outcomes between respondents and non-respondents were tested using Pearson chi-squared tests. Selection bias (i.e. bias in the association between risk factors and specific outcomes) was analysed by regression analysis with and without adjustment for participation status. The ABCD non-respondents were significantly younger, more often non-western, and more often multiparae. Non-respondents entered antenatal care later, were more often under supervision of an obstetrician and had a spontaneous delivery more often. Non-response however, was not significantly associated with preterm birth (odds ratio 1.10; 95% CI 0.93, 1.29) or low birthweight (odds ratio 1.16; 95% CI 0.98, 1.37) after adjustment for sociodemographic risk factors. The associations found between risk factors and adverse pregnancy outcomes were similar for respondents and non-respondents. Anonymised record linkage of cohort study data with national registry data indicated that selective non-response was present in the ABCD-study, but selection bias was acceptably low and did not influence the main study questions. [source] The Success of Continued Steroid Avoidance After Kidney Transplantation in the USAMERICAN JOURNAL OF TRANSPLANTATION, Issue 12 2009J. D. Schold There has been a significant increase in the use of steroid avoidance regimens as initial treatment for kidney transplant recipients. Early results of the effectiveness of this strategy has been mixed with certain prospective trials indicating increased acute rejection but population-based studies indicating similar or better graft survival as compared to steroid maintenance. We conducted a retrospective study of national registry data to evaluate risk factors for discontinuation of steroid avoidance protocols based on patient characteristics and concomitant immunosuppression. We evaluated 84 647 solitary kidney transplant recipients in the US with at least 6 months graft survival including 24 218 initially discharged without maintenance steroids. We utilized logistic models to assess risk factors for new initiation of steroids after initial steroid-avoidance and survival models to describe graft survival for patients after return to steroids. The most prominent risk factors for new initiation of steroids after deceased donor kidney transplantation included African-American race (AOR = 1.32, p < 0.01), retransplants (AOR = 1.81, p < 0.01), highly sensitized recipients (AOR = 1.29, p < 0.01), recipients with Medicaid (AOR = 1.85, p < 0.01), elevated HLA-MM (AOR = 1.26, p < 0.01) and older donor age (AOR = 1.19, p < 0.01). Concomitant medications were also significantly associated with the propensity to newly initiate steroids. Cumulatively the study suggests that both patient characteristics and concomitant medications are strongly associated with the success of steroid avoidance immunosuppressive regimens. [source] Secondary Listing for Deceased-Donor Kidney Transplantation Does Not Increase Likelihood of Engraftment at a Large Transplant CenterAMERICAN JOURNAL OF TRANSPLANTATION, Issue 7 2009V. Kumar The supply of donor organs has not increased as fast as has the number of patients awaiting kidney transplantation. Few organs are shared outside the areas of recovery. This trend has caused some ESRD patients to seek listing at multiple centers. We examined UNOS registry data and transplant registry data at the University of Alabama at Birmingham (UAB) for the 576 patients listed at multiple centers over an 8-year span ending December 31, 2005. We identified 72 multilisted patients who received a deceased-donor renal allograft at UAB and reviewed their records for demographics, HLA matching and transfer of listing time. The only predictors for transplantation at UAB were initial listing at UAB or transfer of waiting time. Fifty-one of the 72 patients had listed at UAB first; the other 21 had transferred waiting time. None of the 176 patients who listed elsewhere first and did not transfer waiting time had been transplanted at UAB. Aggregate cost of listing and evaluation for the 176 patients listed elsewhere first who did not transfer waiting time was $1 254 528. Secondary listing at UAB, with a large cohort awaiting transplantation, without transfer of waiting time from another center was an expensive and futile process. [source] Transplant Center Volume and Outcomes After Liver RetransplantationAMERICAN JOURNAL OF TRANSPLANTATION, Issue 2 2009P. P. Reese Liver retransplantation surgery has a high rate of allograft failure due to patient comorbidities and technical demands of the procedure. Success of liver retransplantation could depend on surgeon experience and processes of care that relate to center volume. We performed a retrospective cohort study of adult liver retransplantation procedures performed from January 1, 1996 through December 31, 2005 using registry data from the Organ Procurement Transplantation Network. The primary outcome was 1-year allograft failure. Liver transplant centers were categorized as small, intermediate or high volume by dividing overall liver transplants into three tertiles of approximately equal size. Mean annual volume of overall liver transplants was <50 for low-volume centers, 50,88 for intermediate-volume centers and >88 for high-volume centers. The primary analysis consisted of 3977 liver retransplantation patients. The unadjusted risk of 1-year allograft failure was 37.8%. In multivariable logistic regression, the risk of 1-year allograft failure was not significantly different between low- (reference), intermediate- (OR 0.86, CI 0.72,1.03, p = 0.11) and high-volume centers (OR 0.88, CI 0.74,1.04, p = 0.14). Results were similar when the analysis was limited to retransplantation performed >160 days after initial transplantation. Center volume is an imprecise surrogate measure for 1-year outcomes after liver retransplantation. [source] Lack of Interventional Studies in Renal Transplant Candidates with Elevated Cardiovascular RiskAMERICAN JOURNAL OF TRANSPLANTATION, Issue 3 2007M. A. Schnitzler Although analysis of registry data is useful, the effectiveness of interventions to reduce risk cannot be predicted with confidence from such analyses, and will require prospective intervention studies. See also article by Schold et al in this issue on page 550. [source] Patterns of care in elderly glioblastoma patients,ANNALS OF NEUROLOGY, Issue 6 2008Fabio M. Iwamoto MD Objective To evaluate the patterns of care in elderly glioblastoma (GBM) patients from a large population-based registry. Methods We identified a cohort of GBM patients 65 years or older from Surveillance, Epidemiology, and End Results cancer registry data linked with Medicare claims between 1994 and 2002. We assessed the impact of demographic characteristics and comorbidities on the probability of undergoing surgical resection, radiotherapy (RT), and chemotherapy within 3 months of diagnosis using multivariate logistic regression. Results A total of 4,137 patients with GBM were included, with a median overall survival of 4 months. Sixty-one percent of patients underwent resection at diagnosis; 65% received RT and 10% received chemotherapy within 3 months of diagnosis. In a multivariate regression analysis, age was the most significant predictor of resection, RT, or chemotherapy. Black race (odds ratio [OR], 0.64; p = 0.008) was associated with lower rates of surgical resection. Factors associated with decreased likelihood of receiving RT included unmarried marital status (OR, 0.64; p < 0.0001) and more comorbidities (OR, 0.55; p < 0.0001). Factors associated with decreased likelihood of receiving chemotherapy included unmarried marital status (OR, 0.59; p = 0.0002) and more comorbidities (OR, 0.56; p = 0.02). Interpretation Survival of elderly GBM patients was poor in this population-based study. Age, marital status, and comorbidities influenced the probability of receiving RT or chemotherapy in this cohort. Ann Neurol 2008;64:628,634 [source] Melanoma in organ transplant recipients: The old enemy finds a new battlegroundAUSTRALASIAN JOURNAL OF DERMATOLOGY, Issue 4 2007Quan Q Dinh SUMMARY Population registry data and published studies have demonstrated that melanomas in the transplant population occur 1.6,2.5 times more commonly compared with the general population. Studies examining possible risk factors have suggested that in this patient population, there is an increased number of melanocytic naevi. Whether this phenomenon is aetiologically related to subsequent melanoma development is currently unclear. Only one study examined the prognosis of melanomas in this population. The Israel Penn International Transplant Tumor Registry has collated patient data voluntarily submitted by transplant physicians throughout the USA since 1968. Analysis of melanomas in this study found that approximately half were Breslow thickness >1.51 mm. Overall, there was a high rate of nodal and distant metastases, with poorer 1-, 3- and 5-year survival rates compared with the general population. There is a paucity of good-quality evidence regarding melanoma in organ transplant recipients. Further research involving international collaborative trials, particularly on risk factors and the prognosis of melanomas in this population, could present a more substantial evidence base from which treatment guidelines based on data could be developed. [source] | ||||||||||||||||||||||||||||||||||