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Background To evaluate the differences in pregnancy outcomes between assisted reproductive technology (ART) patients and natural pregnant women in Shanghai, China in the past 6 years objectively. And to assess the feasibility of the research method of registry-database linkage in mainland China. Methods This retrospective study was conducted using registry-database linkage. A total of 8102 pregnancies with ART and 8096 parturients with spontaneous conception (SC) from 10 reproductive centers and 111 hospitals composed our retrospective study. The primary outcomes were the rates of obstetric complications (pregnancy-induced hypertention [PIH], gestational diabetes mellitus [GDM], placenta previa, mode of delivery, preterm birth [PTB], low birth weight [LBW], and macrosomia). The prenatal outcomes were compared between ART and SC parturients, frozen-thawed embryo transfer (FET) and fresh embryo transfer, and in vitro fertilization (IVF) and intracytoplasmic sperm injection (ICSI). We calculated odds ratios (ORs) and 95% confidence intervals (CIs). Results The final matching rate of the target population was 92% by using registry linkage. ART resulted in a higher rate of multiple birth, PTB, LBW, cesarean section, placenta previa and GDM compared with SC in the singleton cohort. In ART patients, pregnant women with FET had a significantly higher risk of PIH than those with fresh embryo transfer (14.1% Vs 9.3%, AOR1.528, 95% CI 1.303–1.793), but there was no difference between IVF and ICSI. FET is also related to the severity of PIH. Conclusions ART increased the rate of complications during pregnancy, the risk and severity of PIH in patients with FET was higher than that in patients with fresh embryo transfer. The registry-database linkage study is an objective and feasible research method in mainland China.

Background There is increasing need for prospective investigations in the preventing role of health-related behaviours on mental health problems. The aim of this study is to identify patterns of health-related behaviours in adolescence, and the association between the behavioural patterns and the subsequent diagnoses and/or drug treatment for anxiety and/or depression in adulthood. Methods This prospective study consisted of 13–19-year-old participants in the Trøndelag Health Study (Young-HUNT3) in 2006–2008 ( n  = 2061, 1205 females and 856 males) in Norway, who also participated in HUNT4 (2017–2019). Survey data on health-related behaviours in adolescence, including low level of physical activity, low consumption of wholegrain bread, fish, fruit, vegetables and high consumption of sugar-sweetened beverages and insomnia were linked on an individual level to prospective information on drug use and diagnosis in national health registries. The different patterns of health-related behaviours were identified through latent class analysis. Subsequent anxiety or depression was defined as at least one recording in either of three registries covering recorded diagnosis in primary and specialist healthcare, or dispensed prescription drugs during 2008–2019. Additionally, self-reported psychological distress measured in young adulthood was applied as a supplemental outcome measure. Results Four patterns of health-related behaviours were identified: high risk behaviours (class 1), moderate to high risk behaviours (class 2), low to moderate risk behaviours (class 3) and low risk behaviours (class 4). Adolescents in class 3 showed higher odds of subsequent diagnoses for anxiety and/or depression in primary and specialist healthcare compared to class 4 participants. In addition, both class 1 and class 4 participants had higher odds for self-reported psychological distress than those class 4 (OR = 1.56 and OR = 1.86, respectively). Conclusions Our findings suggest that health-related behaviours are clustered among Norwegian adolescents. The patterns of unhealthy behaviours during adolescence only partly increased the risk of anxiety and depression in adulthood. Promoting healthy behaviours during adolescence may potentially reduce the burden of mental illness in adulthood, but further research is needed to clarify the nature of the relationships.

Objectives We examined whether having a high percentage of pupils with special educational needs (SEN) in basic education schools increases the risk of sickness absence among teachers and whether this risk is dependent on the pupil-teacher ratio (PTR), an indicator of teacher resources at school. Methods We obtained register data on 8089 teachers working in 404 schools in 10 municipalities in Finland during the school year 2004-2005. We used multilevel multinomial regression models to examine the risk of teachers' short-and long-term sickness absence in relation to the percentage of SEN pupils and the PTR at school. We tested the equality of trends in groups with high and low the PTR using PTR × SEN interaction term. Results After adjustment for teacher and school characteristics, the risk for long-term absences was higher among teachers at schools with a high percentage of SEN pupils than among teachers at schools with a low percentage of SEN pupils [odds ratio (OR) 1.5, 95% confidence interval (95% CI) 1.2-1.8). This was also the case for short-term absences (OR 1.4, 95% CI 1.2-1.7). In analyses stratified by the PTR levels, the association between the percentage of SEN pupils and long-term absences was 15% higher among teachers with a high PTR than among those with a low PTR (P-value for interaction=0.10). Conclusions Teachers' sickness absenteeism seems to increase with a higher percentage of SEN pupils, especially when the PTR is high. Teacher resources at schools that have a high percentage of SEN pupils should be well maintained to ensure the health of teachers.

Background: Only few studies have been carried out on the relationship between pregnancy and deaths from external causes. Methods: Information on deaths from external causes among women aged 15–49 years in Finland in 1987–2000 (n = 5299) was linked to three national health registers to identify pregnancy-associated deaths (n = 212). Results: The mortality rate for women during pregnancy and within 1 year of pregnancy termination from external causes was lower than mortality from external causes among non-pregnant women (relative risk 0.79; 95% confidence interval 0.69–0.91). Owing to elevated suicide and homicide rates, however, an increased risk was observed for women after abortions, especially in the age group of 15–24 years. Conclusions: The low rate of deaths from external causes suggests the protective effect of childbirth, but the elevated risk after a terminated pregnancy needs to be recognized in the provision of health care and social services.

Registry-based randomized controlled trials (RRCTs) can provide internally valid results in a real-world context at relatively low effort and cost. However, the main characteristics, the extent to which the registry is utilized (eg, proportion of data from registry) and registry-related limitations are not well characterized. This methodological review of RRCTs aims to analyze the trial design features, investigate potential usage options, and identify possible limitations of using registry data for randomized controlled trials (RCTs). A systematic search in PubMed for ongoing and published RRCTs was conducted up to February 2, 2023. Studies that reported at least one outcome derived from a registry were included. Study selection was independently performed by two reviewers. All data were extracted into a standardized table, and descriptive statistics were generated. We included 162 RRCTs (41 protocols and 121 studies). Most RRCTs were multicenter trials (n = 127; 78.4%) comprising a large number of participants (median = 1787; range = 41 to 683,927) and a long follow-up period (median = 60 months; range = 1 to 367 months) with a minimal loss to follow-up. The inclusion criteria of participants were mostly broadly defined. Types of interventions ranged from surgical procedures to behavioral interventions, and almost half of the interventions (46.9%) had a preventive purpose. The main registry outcome was mostly a clinical endpoint (40.1%) or a composite endpoint of major clinical events (30.9%) that was objectively measurable. We found different degrees of registry utilization, ranging from the exclusive use of long-term monitoring of previously published data to the more comprehensive registry utilization for patient recruitment, endpoint collection, and long-term follow-up. Limitations related to the use of registry data comprised potential coding errors or incomplete data (eg, due to under-recording of mild cases). In addition, technical challenges must be considered (eg, failed linkages or time-delayed data entry). A broad spectrum of potential usage options and usage extent of registry data exist. Our analysis suggests that in many cases, the potential of using registry data and thus their benefits were not fully utilized. In addition, the study illustrates that there is not a single, unified methodology for designing RRCTs but that registries can support RCTs in various ways. Therefore, future RRCTs should specify for what purposes and to what extent registries were utilized. Moreover, a clear definition and taxonomy of RRCTs appears necessary for facilitating future dialogue and research on RRCTs.

To gain insight into the performance of deterministic record linkage (DRL) vs. probabilistic record linkage (PRL) strategies under different conditions by varying the frequency of registration errors and the amount of discriminating power. A simulation study in which data characteristics were varied to create a range of realistic linkage scenarios. For each scenario, we compared the number of misclassifications (number of false nonlinks and false links) made by the different linking strategies: deterministic full, deterministic N-1, and probabilistic. The full deterministic strategy produced the lowest number of false positive links but at the expense of missing considerable numbers of matches dependent on the error rate of the linking variables. The probabilistic strategy outperformed the deterministic strategy (full or N−1) across all scenarios. A deterministic strategy can match the performance of a probabilistic approach providing that the decision about which disagreements should be tolerated is made correctly. This requires a priori knowledge about the quality of all linking variables, whereas this information is inherently generated by a probabilistic strategy. PRL is more flexible and provides data about the quality of the linkage process that in turn can minimize the degree of linking errors, given the data provided.

The methodological advances in epidemiology have facilitated the use of the Danish Civil Registration System (CRS) in ways not previously described systematically. We reviewed the CRS and its use as a research tool in epidemiology. We obtained information from the Danish Law on Civil Registration and the Central Office of Civil Registration, and used existing literature to provide illustrative examples of its use. The CRS is an administrative register established on April 2, 1968. It contains individual-level information on all persons residing in Denmark (and Greenland as of May 1, 1972). By January 2014, the CRS had cumulatively registered 9.5 million individuals and more than 400 million person-years of follow-up. A unique ten-digit Civil Personal Register number assigned to all persons in the CRS allows for technically easy, cost-effective, and unambiguous individual-level record linkage of Danish registers. Daily updated information on migration and vital status allows for nationwide cohort studies with virtually complete longterm follow-up on emigration and death. The CRS facilitates sampling of general population comparison cohorts, controls in case-control studies, family cohorts, and target groups in population surveys. The data in the CRS are virtually complete, have high accuracy, and can be retrieved for research purposes while protecting the anonymity of Danish residents. In conclusion, the CRS is a key tool for epidemiological research in Denmark.

Background The absence of a link between cancer registries and governmental mortality databases in Saudi Arabia (SA) poses a significant challenge. This disconnect results in incomplete and inaccurate cancer registry survival data, which is crucial for precise survival estimates. While survival data could be updated through direct contact with cancer patients, their families, or physicians, the more accurate and effective method is through computerized linkage. Unfortunately, this method is not currently utilized in SA. Objective This research aims to assess the knowledge and opinion of the experts in the field of cancer on the importance of having a computerized linkage between cancer registries and Saudi Arabia’s National Death Registry, and secondly, to evaluate the effect of the currently used different follow-up methods on five-year survival estimates. Methods This study employed a cross-sectional, mixed-methods design. The qualitative component explored experts’ opinions on using record linkage to obtain survival data, assessed through a Likert-scale questionnaire. In the quantitative component, currently available methods to obtain survival data from healthcare systems were evaluated using survival analysis and compared to the active follow-up method. Survival analysis was performed using the Kaplan–Meier method. Survival probabilities were compared using the log-rank test. Results The survey outcome revealed that 100% ( n = 9) of the experts preferred the proposed computerized linkage method to update cancer survival data. The survival analysis using the healthcare system's mortality data without linkage to the National Death Registry results in an overestimated survival rate of 77.9% vs. 70.2%, with a P -value < 0.001. Conclusion The study's findings underscore the limitations of the current system. The mortality data from the health systems alone cannot be relied upon, as they only report deaths within their system. To obtain accurate and complete data, trustworthy sources such as the National Death Registry must be utilized. The direct (active) follow-up, while effective, is a resource-intensive process that cannot be used for all cancer patients, even at the hospital level. Therefore, adopting the proposed computerized linkage is recommended.

SummaryThe Forteo Patient Registry estimated the incidence of osteosarcoma in US patients treated with teriparatide and enrolled in the study between 2009 and 2019. No incident cases of osteosarcoma were identified among patients registered, and the crude incidence rate was 0 (95% confidence interval [CI], 0–10.2) cases per million person-years.PurposeThe prospective, voluntary Forteo Patient Registry was established to estimate the incidence of osteosarcoma in patients who have received treatment with teriparatide (Forteo).MethodsInformation on US adults prescribed teriparatide and enrolled in the Forteo Patient Registry 2009–2019 was linked with data from participating state cancer registries annually (2010–2019) to identify incident osteosarcoma cases using a standardized linkage algorithm. Teriparatide exposure was ascertained from self-reported data that included teriparatide initiation and demographics necessary to complete linkage. Osteosarcoma cases diagnosed on or after January 1, 2009, were identified by participating state cancer registries. The crude incidence rate (IR) and standardized incidence ratio (SIR) of observed cases to the expected number of cases adjusted to the background rate (3 per million person-years) and corresponding 95% CIs for the occurrence of osteosarcoma were calculated whereby the cumulative amount of person-time observed was adjusted for mortality.ResultsData for 75,247 enrolled patients (representing 361,763 cumulative person-years) were linked to each of 42 participating state cancer registries (covering 93% of the US population), which included information on 6180 cases of osteosarcoma. No matches with incident cases of osteosarcoma following registry enrollment were found. The crude IR was 0 (95% CI, 0–10.2) cases per million person-years and the SIR was 0 (95% CI, 0–3.0).ConclusionsThe ability to draw conclusions about the incidence of osteosarcoma among patients participating in the registry was limited due to the smaller than expected amount of patient follow-up time and the fact that no cases were identified.

Background In many low and middle-income countries, Tuberculosis (TB) surveillance systems miss out on reporting on detected cases suggesting gaps in the TB case detection and documentation systems. The World Health Organisation estimates that less than half of TB cases in Ghana are notified. Capture-recapture (CR) techniques that involve data linkages have been applied in various settings to estimate the total number of tuberculosis cases, including those unreported. This study evaluated the completeness of reporting of TB in a region of Ghana using CR techniques. Methods We evaluated the completeness of TB case notification data reported between 2016 and 2017 by performing record linkage in five out of 26 districts in the Eastern Region of Ghana. We linked data of all bacteriologically confirmed pulmonary TB (PTB) cases recorded in three registries, namely the district, laboratory, and treatment centre registers, to identify gaps in notification. Regression analysis was used to assess linkages of the three records based on name, age and sex. We estimated overall completeness with log-linear modelling. Results There were 2,035 cases across the three registers, of which 773 (38%) were bacteriologically confirmed. The district, laboratory and treatment centre registers had recorded 369 (47.7%), 368 (47.6%) and 404 (52.3%) of the confirmed cases respectively. Only 82 (10.6%) cases were consistent across all three registers. There were 115 (14.9%), 238 (30.8%) and 134 (17.3%) cases that were exclusively in the district, laboratory and treatment centre registers. Log-linear capture-recapture model estimated 2,483 (95%CI: 1,797; 3,813) as expected number of confirmed cases. On that basis, overall completeness of reporting of the district TB registry was 14.9% (369/2,483; 95%CI: 13.5, 16.3). Conclusion We found low levels of completeness of TB case reporting in the study area. A more wider assessment of the surveillance system in Ghana is needed to identify gaps in reporting.