Abstract:
Purpose:Inherited ichthyosis is a monogenetic disease characterized by hyperkeratosis and scaling of the skin, with large interindividual variation in severity. It can affect quality of life for patients and their families. Population-based data on inherited ichthyosis are lacking, which hampers studies into its epidemiology. Patients and Methods:Based on medical record review, we validated diagnoses of inherited ichthyosis in two nationwide population-based registries commonly used for epidemiological research: The Danish National Patient Registry and the Danish Pathology Registry. The study period was January 1, 1977, through December 31, 2015. Validation samples were taken from one regional hospital without a specialized dermatological department and two specialized dermatological departments. Positive predictive values (PPVs) were estimated overall and for each coding system (ICD-8, ICD-10 and SNOMED), including for specific ICD-10 codes. Results:We identified 1772 first-time diagnoses of inherited ichthyosis; 363 patients were diagnosed at the departments selected for validation, and 307 of these patients (84.6%) had medical records enabling validation. We observed an overall PPV of 73.3% (95% CI: 68.1-77.9). For ICD-8, ICD-10, and SNOMED diagnoses, the PPVs were 73.2% (95% CI: 58.1-84.3), 74.7% (95% CI: 69.0-79.7), and 46.2% (95% CI: 22.1-71.7), respectively. In analyses for ICD-10 diagnoses, we observed much higher validity of diagnoses from the specialized departments (PPV 79.7%; 95% CI: 74.1-84.3) than the regional hospital (PPV 5.9%; 95% CI: 0.6-24.3). The PPVs for specific diagnoses were 80.1% for ichthyosis vulgaris and 96.6% for X-linked ichthyosis but below 45% for remaining, rarer, subtypes. Conclusion:The PPV of first-time diagnosis of inherited ichthyosis made at specialized dermatological departments in the Danish National Patient Registry is approximately 80%. Diagnoses from the Danish Pathology Registry had low PPVs precluding their use for research.
journal_name
Clin Epidemioljournal_title
Clinical epidemiologyauthors
Kristensen MH,Schmidt SAJ,Kibsgaard L,Hove H,Sommerlund M,Koppelhus Udoi
10.2147/CLEP.S232956subject
Has Abstractpub_date
2020-06-19 00:00:00pages
651-657issn
1179-1349pii
232956journal_volume
12pub_type
杂志文章abstract:BACKGROUND:Comorbidity indices summarize complex medical histories into concise ordinal scales, facilitating stratification and regression in epidemiologic analyses. Low subject prevalence in the highest strata of a comorbidity index often prompts combination of upper categories into a single stratum ('collapsing'). O...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/clep.s5757
更新日期:2009-08-09 00:00:00
abstract:BACKGROUND:Data from the Nordic health care registers have been of great value in perinatal epidemiological research. It has been assumed that findings from the Nordic population (Denmark, Finland, Iceland, Norway, and Sweden) are applicable to other populations as well, including the population of the US. OBJECTIVE:T...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S106126
更新日期:2016-08-03 00:00:00
abstract:Background:Prenatal exposures may contribute to male infertility in adult life, but large-scale epidemiological evidence is still lacking. The Fetal Programming of Semen quality (FEPOS) cohort was founded to provide means to examine if fetal exposures can interfere with fetal reproductive development and ultimately lea...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S242631
更新日期:2020-07-17 00:00:00
abstract:Aim:To improve consistency between register studies in Sweden and ensure valid comparisons of possible changes in alcohol-related disorders and diseases (ARDDs) over time, we propose a definition of ARDDs. Based on this definition, we examined Sweden's incidence rates of ARDDs from 1970 to 2018 in non-primary healthcar...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S285936
更新日期:2020-12-31 00:00:00
abstract:BACKGROUND:Severe infection resulting in sepsis is recognized as a leading cause of morbidity and mortality worldwide. The purpose of this study is to use longitudinal, population-based data to report national-level hospital metrics, providing a current assessment of the status of sepsis hospitalizations in Canadian ch...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S72282
更新日期:2014-12-05 00:00:00
abstract::Routinely-collected health data (RCD) are now used for a wide range of studies, including observational studies, comparative effectiveness research, diagnostics, studies of adverse effects, and predictive analytics. At the same time, limitations inherent in using data collected without specific a priori research quest...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S110528
更新日期:2016-10-19 00:00:00
abstract:Objective:Reports on the epidemiology of vestibular schwannoma (VS) indicate an increase in diagnosed cases, often based on selected materials over a limited period of time. This report presents prospective 40-year epidemiological data from an unselected national cohort of all patients diagnosed with a VS in Denmark si...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S218670
更新日期:2019-11-08 00:00:00
abstract:BACKGROUND:Administrative data may be useful for epidemiological studies of chronic idiopathic thrombocytopenic purpura (ITP). However, the quality of the recorded diagnoses needs evaluation. AIM:We evaluated the validity in predicting chronic ITP of the International Classification of Diseases (ICD)-10 diagnoses of I...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/clep.s4832
更新日期:2009-08-09 00:00:00
abstract:BACKGROUND:Long-term mortality and causes of death in patients with pulmonary tuberculosis (PTB) and extrapulmonary tuberculosis (EPTB) are poorly documented. In this study, long-term mortality and causes of death in PTB and EPTB patients were compared with the background population and it was investigated whether mort...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S65331
更新日期:2014-11-13 00:00:00
abstract:Background:Cost-effective primary prevention of cardiovascular disease (CVD) relies on accuracy of risk assessment. Current risk scores require clinical and laboratory measures, are expensive and are often difficult to apply in the population setting. Objective:This study sought to estimate CVD risk from individuals' ...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S219708
更新日期:2020-01-14 00:00:00
abstract:Background:Association between psoriasis severity and cerebro- and cardiovascular comorbidities has rarely been investigated. Aim:We aimed to investigate differences in cerebro- and cardiovascular comorbidities by psoriasis severity. Materials and methods:Using Swedish nationwide health-care registers, new adult user...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S164918
更新日期:2018-06-19 00:00:00
abstract:BACKGROUND:Physical activity (PA) and its relationship with all-cause mortality suggest a strong and consistent inverse association. This study prospectively investigated the association between PA level and mortality among participants of the Norwegian Women and Cancer (NOWAC) Study. METHODS:A total of 66,136 NOWAC p...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S22681
更新日期:2011-01-01 00:00:00
abstract:Purpose:To report completeness of registered surgeries in the Danish hip arthroscopy registry (DHAR) and proportion of patients completing patient-reported outcome measures (PROMs) prior to surgery and at 1-year follow-up. Patients and Methods:Completeness was determined as the number of surgeries registered in DHAR i...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S264683
更新日期:2020-08-04 00:00:00
abstract:BACKGROUND:To date there has not been any nationwide age-standardized incidence data reported for prostate cancer in Nigeria. We examined and integrated diverse trends in the age-specific incidence of prostate cancer into a comprehensive trend for Nigeria, and examined how best the existing data could generate a countr...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S23536
更新日期:2012-01-01 00:00:00
abstract:OBJECTIVE:Invasive bladder cancer (IBC) is a common urological malignancy accounting for 4%-5% of all cancers in Denmark. Our aim was to examine possible changes in short- and long-term survival of patients with IBC during 1998-2009. STUDY DESIGN AND SETTING:Data on all patients (N = 4032) with an incident diagnosis o...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S20615
更新日期:2011-01-01 00:00:00
abstract:AIM:In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL) in Denmark. Secondarily, to evaluate adherence to national gui...
journal_title:Clinical epidemiology
pub_type: 杂志文章,评审
doi:10.2147/CLEP.S99486
更新日期:2016-10-25 00:00:00
abstract:Background:Decision makers in health care increasingly rely on nonrandomized database analyses to assess the effectiveness, safety, and value of medical products. Health care data scientists use data-adaptive approaches that automatically optimize confounding control to study causal treatment effects. This article summ...
journal_title:Clinical epidemiology
pub_type: 杂志文章,评审
doi:10.2147/CLEP.S166545
更新日期:2018-07-06 00:00:00
abstract:BACKGROUND:A number of population-based studies have demonstrated lower cancer survival in elderly patients than among middle-aged or younger patients. Also, data quality in cancer registries has been shown to be associated with age. The objective of this study was to examine the recent age-specific cancer survival tre...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S87699
更新日期:2015-07-29 00:00:00
abstract:OBJECTIVE:In medicine, many more prediction models have been developed than are implemented or used in clinical practice. These models cannot be recommended for clinical use before external validity is established. Though various models to predict mortality in dialysis patients have been published, very few have been v...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S139748
更新日期:2017-09-05 00:00:00
abstract:BACKGROUND:A number of studies have shown poorer survival among cancer patients with comorbidity. Several mechanisms may underlie this finding. In this review we summarize the current literature on the association between patient comorbidity and cancer prognosis. Prognostic factors examined include tumor biology, diagn...
journal_title:Clinical epidemiology
pub_type: 杂志文章,评审
doi:10.2147/CLEP.S47150
更新日期:2013-11-01 00:00:00
abstract:Purpose:To establish the validity of intracerebral hemorrhage (ICH) diagnoses in the Danish Stroke Registry (DSR) and the Danish National Patient Registry (DNPR). Patients and Methods:Based on discharge summaries and brain imaging reports, we estimated the positive predictive value (PPV) of a first-ever diagnosis code...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S267583
更新日期:2020-12-01 00:00:00
abstract:PURPOSE:Rotavirus (RV) is a leading cause of severe gastroenteritis (GE) in children across the world. As there is a lack of epidemiological data for RV gastroenteritis (RVGE) in Saudi Arabia, this hospital-based study was designed to estimate the disease burden of RVGE and assess the prevalent RV types in Saudi childr...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S69502
更新日期:2015-02-11 00:00:00
abstract:Background:The combination of organized cervical cancer screening and childhood HPV vaccination programs has the potential to eliminate cervical cancer in the future. However, only women participating in both programs gain the full protection, and combined non-attenders remain at high risk of developing cervical cancer...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S203023
更新日期:2019-11-08 00:00:00
abstract:Background:The presence of comorbid medical conditions can significantly affect a cancer patient's treatment options, quality of life, and survival. However, these important data are often lacking from population-based cancer registries. Leveraging routine linkage to hospital discharge data, a comorbidity score was cal...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S146395
更新日期:2017-11-20 00:00:00
abstract:Background:Primary care databases represent a rich source of data for health care research; however, the quality of recording of secondary care events in these databases is uncertain. This study sought to investigate the completeness of recording of hospital admissions for bleeds in primary care records and explore the...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S170304
更新日期:2018-09-04 00:00:00
abstract::[This corrects the article DOI: 10.2147/CLEP.S249903.]. ...
journal_title:Clinical epidemiology
pub_type: 杂志文章,已发布勘误
doi:10.2147/CLEP.S259005
更新日期:2020-04-29 00:00:00
abstract:BACKGROUND:Case-control studies are a common and efficient means of studying rare diseases or illnesses with long latency periods. Matching of cases and controls is frequently employed to control the effects of known potential confounding variables. The analysis of matched data requires specific statistical methods. M...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S30816
更新日期:2012-01-01 00:00:00
abstract:AIM OF DATABASE:The Danish Nonmelanoma Skin Cancer Dermatology Database was established in 2008. The aim of this database was to collect data on nonmelanoma skin cancer (NMSC) treatment and improve its treatment in Denmark. NMSC is the most common malignancy in the western countries and represents a significant challen...
journal_title:Clinical epidemiology
pub_type: 杂志文章,评审
doi:10.2147/CLEP.S99464
更新日期:2016-10-25 00:00:00
abstract:INTRODUCTION:Few modern population-based estimates of the prognosis of ruptured abdominal aortic aneurysm (rAAA) exist. METHODS AND MATERIALS:From 1994-2008, a total of 6954 rAAA cases were identified in Danish nationwide population-based registries. RESULTS:Of 3148 (45%) surgery cases, 1454 (46%) died within 30 days...
journal_title:Clinical epidemiology
pub_type: 杂志文章
doi:10.2147/CLEP.S31098
更新日期:2012-01-01 00:00:00
abstract:AIM OF DATABASE:The aim of the National Database of Geriatrics is to monitor the quality of interdisciplinary diagnostics and treatment of patients admitted to a geriatric hospital unit. STUDY POPULATION:The database population consists of patients who were admitted to a geriatric hospital unit. Geriatric patients can...
journal_title:Clinical epidemiology
pub_type: 杂志文章,评审
doi:10.2147/CLEP.S99473
更新日期:2016-10-25 00:00:00