Aims: Health registers are used for administrative purposes, disease surveillance, quality assessment, and research. The value of the registers is entirely dependent on the quality of their data. The ...aim of this study was to investigate and compare the completeness and correctness of the acute myocardial infarction (AMI) diagnosis in the Norwegian Myocardial Infarction Register and in the Norwegian Patient Register. Methods: All Norwegian patients admitted directly to St Olavs hospital, Trondheim University Hospital, Trondheim University Hospital from 1 July to 31 December 2012 and who had plasma levels of cardiac troponin T measured during their hospitalization (n=4835 unique individuals, n=5882 hospitalizations) were identified in the hospital biochemical database. A gold standard for AMI was established by evaluation of maximum troponin T levels and by review of the information in the medical records. Cases of AMI in the registers were classified as true positive, false positive, true negative, and false negative according to the gold standard. We calculated sensitivity, positive predictive value (PPV), specificity, and negative predictive value (NPV). Results: The Norwegian Myocardial Infarction Register had a sensitivity of 86.0% (95% confidence interval (CI) 82.8–89.3%), PPV of 97.9% (96.4–99.3%), and specificity of 99.9% and NPV of 98.9% (98.6-99.2%) (99.8–100%). The corresponding figures for the Norwegian Patient Register were 85.8% (95% CI 82.5–89.1%), 95.1% (92.9–97.2%), and 99.7% (99.5–99.8%) and 98.9% (98.6-99.2%), respectively. Both registers had a sensitivity higher than 95% when compared to hospital discharge diagnoses. The results were similar for men and women and for cases below and above 80 years of age. Conclusions: The Norwegian Myocardial Infarction Register and the Norwegian Patient Register are adequately complete and correct for administrative purposes, disease surveillance, quality assessment, and research.
Population ageing has substantially contributed to the rising number of new cancer cases worldwide. We document cancer incidence patterns in 2012 among older adults globally, and examine the changing ...magnitude of cancer in this age group over the next decades. Using GLOBOCAN 2012 data, we presented the number and proportion of new cancer cases, and the truncated age‐standardised incidence rates among adults aged 65 years and older for all cancer sites combined and for the five most common cancer sites by world region. We calculated the incidence in 2035 by applying population projections, assuming no changes in rates. In 2012, 6.7 million new cancer cases (47.5% of all cancers) were diagnosed among older adults worldwide, with marked regional disparities. Nearly 48% of these cases occurred in less developed regions. Lung, colorectal, prostate, stomach and breast cancers represented 55% of the global incidence, yet distinct regional patterns were observed. We predict 14 million new cancer cases by 2035, representing almost 60% of the global cancer incidence. The largest relative increase in incidence is predicted in the Middle East and Northern Africa (+157%), and in China (+155%). Less developed regions will see an increase of new cases by 144%, compared to 54% in more developed regions. The expected increase in cancer incidence at older ages will have substantial economic and social impacts globally, posing considerable and unique challenge to healthcare systems in every world region, especially in those with limited resources and weaker health systems.
What's new?
Population aging has substantially contributed to the rising cancer incidence worldwide. However, an in‐depth global description of the burden of cancer at older ages is long overdue. This study examined the cancer burden in adults aged 65+ according to cancer sites and world regions. In 2012, 7 million new cancer diagnoses occurred among adults aged 65+, almost 50% of them in less developed regions. By 2035, older adults will represent about 60% of all newly diagnosed cases. The growing cancer burden among older adults will result in major societal and economic challenges for the provision of care and health services.
Aims: The Finnish Hospital Discharge Register (FHDR) is one of the oldest individual level hospital discharge registers and has been intensively used for research purposes. The aim of this study was ...to gather information concerning the quality of FHDR into one place in terms of a systematic review of validation studies that compare data to external information. Methods: Several reference databases were searched for validity articles published until January 2012. For each included study, focus of validation, register years examined, number of compared observations, external source(s) of data, summary of validation results, and conclusions concerning the validity of FHDR were extracted. Results: In total, 32 different studies comparing FHDR data to external information were identified. Most of the studies examined validity in the case of vascular disease, mental disorders or injuries. More than 95% of discharges could be identified from the register. Positive predictive value (PPV) for common diagnoses was between 75 and 99%. Conclusions: Completeness and accuracy in the register seem to vary from satisfactory to very good in the register as long as the recognised limitations are taking into account. Poor recording of subsidiary diagnoses and secondary operations and other rarely used items are the most obvious limitations in validity, but do not compromise the value of data in FHDR in being used in studies that are not feasible to conduct otherwise.
Background
The American Cancer Society, the Centers for Disease Control and Prevention, the National Cancer Institute, and the North American Association of Central Cancer Registries collaborate to ...provide annual updates on cancer occurrence and trends in the United States.
Methods
Data on new cancer diagnoses during 2001 through 2016 were obtained from the Centers for Disease Control and Prevention‐funded and National Cancer Institute‐funded population‐based cancer registry programs and compiled by the North American Association of Central Cancer Registries. Data on cancer deaths during 2001 through 2017 were obtained from the National Center for Health Statistics' National Vital Statistics System. Trends in incidence and death rates for all cancers combined and for the leading cancer types by sex, racial/ethnic group, and age were estimated by joinpoint analysis and characterized by the average annual percent change during the most recent 5 years (2012‐2016 for incidence and 2013‐2017 for mortality).
Results
Overall, cancer incidence rates decreased 0.6% on average per year during 2012 through 2016, but trends differed by sex, racial/ethnic group, and cancer type. Among males, cancer incidence rates were stable overall and among non‐Hispanic white males but decreased in other racial/ethnic groups; rates increased for 5 of the 17 most common cancers, were stable for 7 cancers (including prostate), and decreased for 5 cancers (including lung and bronchus lung and colorectal). Among females, cancer incidence rates increased during 2012 to 2016 in all racial/ethnic groups, increasing on average 0.2% per year; rates increased for 8 of the 18 most common cancers (including breast), were stable for 6 cancers (including colorectal), and decreased for 4 cancers (including lung). Overall, cancer death rates decreased 1.5% on average per year during 2013 to 2017, decreasing 1.8% per year among males and 1.4% per year among females. During 2013 to 2017, cancer death rates decreased for all cancers combined among both males and females in each racial/ethnic group, for 11 of the 19 most common cancers among males (including lung and colorectal), and for 14 of the 20 most common cancers among females (including lung, colorectal, and breast). The largest declines in death rates were observed for melanoma of the skin (decreasing 6.1% per year among males and 6.3% among females) and lung (decreasing 4.8% per year among males and 3.7% among females). Among children younger than 15 years, cancer incidence rates increased an average of 0.8% per year during 2012 to 2016, and cancer death rates decreased an average of 1.4% per year during 2013 to 2017. Among adolescents and young adults aged 15 to 39 years, cancer incidence rates increased an average of 0.9% per year during 2012 to 2016, and cancer death rates decreased an average of 1.0% per year during 2013 to 2017.
Conclusions
Although overall cancer death rates continue to decline, incidence rates are leveling off among males and are increasing slightly among females. These trends reflect population changes in cancer risk factors, screening test use, diagnostic practices, and treatment advances. Many cancers can be prevented or treated effectively if they are found early. Population‐based cancer incidence and mortality data can be used to inform efforts to decrease the cancer burden in the United States and regularly monitor progress toward goals.
The Centers for Disease Control and Prevention, the American Cancer Society, the National Cancer Institute, and the North American Association of Central Cancer Registries collaborate to provide annual updates on cancer occurrence and trends in the United States and to address a special topic of interest. Part I of this report focuses on national cancer statistics, and part II characterizes progress in achieving select Healthy People 2020 objectives related to 4 common cancers.
The Swedish cause of death register Brooke, Hannah Louise; Talbäck, Mats; Hörnblad, Jesper ...
European journal of epidemiology,
09/2017, Letnik:
32, Številka:
9
Journal Article
Recenzirano
Odprti dostop
Sweden has a long tradition of recording cause of death data. The Swedish cause of death register is a high quality virtually complete register of all deaths in Sweden since 1952. Although originally ...created for official statistics, it is a highly important data source for medical research since it can be linked to many other national registers, which contain data on social and health factors in the Swedish population. For the appropriate use of this register, it is fundamental to understand its origins and composition. In this paper we describe the origins and composition of the Swedish cause of death register, set out the key strengths and weaknesses of the register, and present the main causes of death across age groups and over time in Sweden. This paper provides a guide and reference to individuals and organisations interested in data from the Swedish cause of death register.
Current short‐term kidney post–transplant survival rates are excellent, but longer‐term outcomes have historically been unchanged. This study used data from the national Scientific Registry of ...Transplant Recipients (SRTR) and evaluated 1‐year and 5‐year graft survival and half‐lives for kidney transplant recipients in the US. All adult (≥18 years) solitary kidney transplants (n = 331,216) from 1995 to 2017 were included in the analysis. Mean age was 49.4 years (SD +/‐13.7), 60% male, and 25% Black. The overall (deceased and living donor) adjusted hazard of graft failure steadily decreased from 0.89 (95%CI: 0.88, 0.91) in era 2000–2004 to 0.46 (95%CI: 0.45, 0.47) for era 2014–2017 (1995–1999 as reference). Improvements in adjusted hazards of graft failure were more favorable for Blacks, diabetics and older recipients. Median survival for deceased donor transplants increased from 8.2 years in era 1995–1999 to an estimated 11.7 years in the most recent era. Living kidney donor transplant median survival increased from 12.1 years in 1995–1999 to an estimated 19.2 years for transplants in 2014–2017. In conclusion, these data show continuous improvement in long‐term outcomes with more notable improvement among higher‐risk subgroups, suggesting a narrowing in the gap for those disadvantaged after transplantation.
Analysis of a large registry database shows that, in the United States, long‐term kidney allograft survival is steadily improving with larger improvement in recipients who are elderly, Black, or diabetic.
Classic galactosemia is a rare inborn error of carbohydrate metabolism, caused by a severe deficiency of the enzyme galactose-1-phosphate uridylyltransferase (GALT). A galactose-restricted diet has ...proven to be very effective to treat the neonatal life-threatening manifestations and has been the cornerstone of treatment for this severe disease. However, burdensome complications occur despite a lifelong diet. For rare diseases, a patient disease specific registry is fundamental to monitor the lifespan pathology and to evaluate the safety and efficacy of potential therapies. In 2014, the international Galactosemias Network (GalNet) developed a web-based patient registry for this disease, the GalNet Registry. The aim was to delineate the natural history of classic galactosemia based on a large dataset of patients.
Observational data derived from 15 countries and 32 centers including 509 patients were acquired between December 2014 and July 2018.
Most affected patients experienced neonatal manifestations (79.8%) and despite following a diet developed brain impairments (85.0%), primary ovarian insufficiency (79.7%) and a diminished bone mineral density (26.5%). Newborn screening, age at onset of dietary treatment, strictness of the galactose-restricted diet, p.Gln188Arg mutation and GALT enzyme activity influenced the clinical picture. Detection by newborn screening and commencement of diet in the first week of life were associated with a more favorable outcome. A homozygous p.Gln188Arg mutation, GALT enzyme activity of ≤ 1% and strict galactose restriction were associated with a less favorable outcome.
This study describes the natural history of classic galactosemia based on the hitherto largest data set.
PDF
