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"Registers (Records)"
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Estimating the completeness of death registration: An empirical method
2018
Many national and subnational governments need to routinely measure the completeness of death registration for monitoring and statistical purposes. Existing methods, such as death distribution and capture-recapture methods, have a number of limitations such as inaccuracy and complexity that prevent widespread application. This paper presents a novel empirical method to estimate completeness of death registration at the national and subnational level.
Random-effects models to predict the logit of death registration completeness were developed from 2,451 country-years in 110 countries from 1970-2015 using the Global Burden of Disease 2015 database. Predictors include the registered crude death rate, under-five mortality rate, population age structure and under-five death registration completeness. Models were developed separately for males, females and both sexes.
All variables are highly significant and reliably predict completeness of registration across a wide range of registered crude death rates (R-squared 0.85). Mean error is highest at medium levels of observed completeness. The models show quite close agreement between predicted and observed completeness for populations outside the dataset. There is high concordance with the Hybrid death distribution method in Brazilian states. Uncertainty in the under-five mortality rate, assessed using the dataset and in Colombian departmentos, has minimal impact on national level predicted completeness, but a larger effect at the subnational level.
The method demonstrates sufficient flexibility to predict a wide range of completeness levels at a given registered crude death rate. The method can be applied utilising data readily available at the subnational level, and can be used to assess completeness of deaths reported from health facilities, censuses and surveys. Its utility is diminished where the adult mortality rate is unusually high for a given under-five mortality rate. The method overcomes the considerable limitations of existing methods and has considerable potential for widespread application by national and subnational governments.
Journal Article
Study-based registers reduce waste in systematic reviewing: discussion and case report
2019
Background
Maintained study-based registers (SBRs) have, at their core, study records linked to, potentially, multiple other records such as references, data sets, standard texts and full-text reports. Such registers can minimise and refine searching, de-duplicating, screening and acquisition of full texts. SBRs can facilitate new review titles/updates and, within seconds, inform the team about the potential workload of each task.
Methods
We discuss the advantages/disadvantages of SBRs and report a case of how such a register was used to develop a successful grant application and deliver results—reducing considerable redundancy of effort.
Results
SBRs saved time in question-setting and scoping and made rapid production of nine Cochrane systematic reviews possible.
Conclusion
Whilst helping prioritise and conduct systematic reviews, SBRs improve quality. Those funding information specialists for literature reviewing could reasonably stipulate the resulting SBR to be delivered for dissemination and use beyond the life of the project.
Journal Article
Comparative analysis of completeness of death registration, adult mortality and life expectancy at birth in Brazil at the subnational level
by
Queiroz, Bernardo L
,
Abreu, Daisy M. X.
,
Vasconcelos, Ana M. N.
in
Brazil
,
Comparative analysis
,
Comparative studies
2020
Background
Estimates of completeness of death registration are crucial to produce estimates of life tables and population projections and to estimate the burden of disease. They are an important step in assessing the quality of data. In the case of subnational data analysis in Brazil, it is important to consider spatial and temporal variation in the quality of mortality data. There are two main sources of data quality evaluation in Brazil, but there are few comparative studies and how they evolve over time. The aim of the paper is to compare and discuss alternative estimates of completeness of death registration, adult mortality (45q15) and life expectancy estimates produced by the National Statistics Office (IBGE), Institute for Health Metrics and Evaluation (IHME), and estimates presented in Queiroz et al. (2017) and Schmertmann and Gonzaga (2018), for 1980 and 2010.
Methods
We provide a descriptive and comparative analysis of aforementioned estimates from four (4) sources of estimates at subnational level (26 states and one Federal District) in Brazil from two different points in time.
Results
We found significant differences in estimates that affect both levels and trends of completeness of adult mortality in Brazil and states. IHME and Queiroz et al. (2017) estimates converge by 2010, but there are large differences when compared to estimates from the National Statistics Office (IBGE). Larger differences are observed for less developed states. We have showed that the quality of mortality data in Brazil has improved steadily overtime, but with large regional variations. However, we have observed that IBGE estimates show the lowest levels of completeness for the Northern of the country compared to other estimates. Choice of methods and approaches might lead to very unexpected results.
Conclusion
We produced a detailed comparative analysis of estimates of completeness of death registration from different sources and discuss the main results and possible explanations for these differences. We have also showed that new improved methods are still needed to study adult mortality in less developed countries and at a subnational level. More comparative studies are important in order to improve quality of estimates in Brazil.
Journal Article
Estimating cause-specific mortality in Madagascar: an evaluation of death notification data from the capital city
2019
Background
Trends in cause-specific mortality in most African countries are currently estimated from epidemiological models because the coverage of the civil registration system is low and national statistics on causes of death are unreliable at the national level. We aim to evaluate the performance of the death notification system in Antananarivo, the capital city of Madagascar, to inform cause-of-death statistics.
Methods
Information on the sex of the deceased, dates of birth and death, and underlying cause of death were transcribed from death registers maintained in Antananarivo. Causes of death were coded in ICD-9 and mapped to cause categories from the Global Burden of Disease 2016 Study (GBD). The performance of the notification system was assessed based on the
Vital Statistics Performance Index
, including six dimensions: completeness of death registration, quality of cause of death reporting, quality of age and sex reporting, internal consistency, level of cause-specific detail, and data availability and timeliness. We redistributed garbage codes and compared cause-specific mortality fractions in death records and estimates from the GBD with concordance correlation coefficients.
Results
The death notification system in Antananarivo performed well on most dimensions, although 31% of all deaths registered over the period 1976–2015 were assigned to ICD codes considered as “major garbage codes” in the GBD 2016. The completeness of death notification, estimated with indirect demographic techniques, was higher than 90% in the period 1975–1993, and recent under-five mortality rates were consistent with estimates from Demographic and Health Surveys referring to the capital city. After redistributing garbage codes, cause-specific mortality fractions derived from death notification data were consistent with GBD 2016 for the whole country in the 1990s, with concordance correlation coefficients higher than 90%. There were larger deviations in recent years, with concordance correlation coefficients in 2015 at 0.74 (95% CI 0.66–0.81) for men and 0.81 (95% CI 0.74–0.86) for women.
Conclusions
Death notification in Antananarivo is a low-cost data source allowing real-time mortality monitoring, with a potential to improve disease burden estimates. Further efforts should be directed towards evaluating data quality in urban centers in Madagascar and other African countries to fill important data gaps on causes of death.
Journal Article
Evaluation of the performance of register data as indicators for dairy herds with high lameness prevalence
by
Otten, Nina Dam
,
Toft, Nils
,
Thomsen, Peter Thorup
in
Animal Anatomy
,
Animal welfare
,
Animals
2019
Background
The modern dairy industry routinely generates data on production and disease. Therefore, the use of these cheap and at times even “free” data to predict a given state of welfare in a cost-effective manner is evaluated in the present study. Such register data could potentially be used in the identification of herds at risk of having animal welfare problems. The present study evaluated the diagnostic performance of four routinely registered indicators for identifying herds with high lameness prevalence among 40 Danish dairy herds. Indicators were extracted as within-herd annual means for a one-year period for cow mortality, bulk milk somatic cell count, proportion of lean cows at slaughter and the standard deviation (SD) of age at first calving. The target condition “high lameness prevalence” was defined as a within-herd prevalence of lame cows of ≥ 16% (third quartile). Diagnostic performance was evaluated by constructing and analysing Receiver Operating Characteristic curves and their area under the curve (AUC) for single indicators and indicator combinations. Sensitivity (Se) and specificity (Sp) of the indicators were assessed at the optimal cut-off based on data and compared to a set of predefined cut-off levels (national annual means or 90-percentile).
Results
Cow mortality had the highest AUC (0.76), while adding the three other indicators to the model did not yield significant increase in AUC. Cow mortality and SD of age at first calving had highest Se (100%, 95% confidence interval (CI): 72–100%), while highest Sp was found for the proportion of lean cows at slaughter (83%, 95% CI: 66–93%). The highest differential positive rate (DPR = 0.53) optimizing both Se and Sp was found for cow mortality. Optimal cut-off points were lower than the presently used pre-defined cut-offs.
Conclusions
The selected register-based indicators proved to be able to identify herds with high lameness prevalences. Optimized cut-offs improved the predictive ability and should therefore be preferred in official control schemes.
Journal Article
Using population registers for migration and integration research: examples from Denmark and Sweden
2018
The paper starts from the observation that research on immigrants’ integration trajectories needs detailed information, both objective and attitudinal, and ideally longitudinal. This study uses the cases of Denmark and Sweden – whose registers produce detailed records about all natives’ and immigrants’ lives in their host countries – in order to, first, review existing research on immigrants and their integration and, second, discuss the way in which register data are used, their caveats and their potential. The study finds that, in Denmark and Sweden, registers provide systematic objective data which are fully available to researchers and have the potential to help in the collection of high-quality subjective data. However, the population registers have some traits which may impact on the representativeness of the samples. The authors argue that, if researchers are aware of the caveats, registers can be used to obtain representative samples of immigrants, and register data can be complemented with survey-based attitudinal data, thus opening up new research opportunities for testing propositions on integration theories.
Journal Article
Potentially inappropriate prescribing and adverse drug reactions in the elderly: a population-based study
by
Gyllensten, Hanna
,
Petzold, Max
,
Jönsson, Anna K.
in
Accidental Falls - statistics & numerical data
,
Adverse drug reactions
,
Aged
2015
Purpose
Potentially inappropriate prescriptions (PIPs) criteria are widely used for evaluating the quality of prescribing in elderly. However, there is limited evidence on their association with adverse drug reactions (ADRs) across healthcare settings. The study aimed to determine the prevalence of PIPs, defined by the Screening Tool of Older Persons’ potentially inappropriate Prescriptions (STOPP) criteria, in the Swedish elderly general population and to investigate the association between PIPs and occurrence of ADRs.
Method
Persons ≥65 years old were identified from a random sample of 5025 adults drawn from the Swedish Total Population Register. A retrospective cohort study was conducted among 813 elderly with healthcare encounters in primary and specialised healthcare settings during a 3-month period in 2008. PIPs were identified from the Swedish Prescribed Drug Register, medical records and health administrative data. ADRs were independently identified by expert reviewers in a stepwise manner using the Howard criteria. Multivariable logistic regression examined the association between PIPs and ADRs.
Results
Overall, 374 (46.0 %) persons had ≥1 PIPs and 159 (19.5 %) experienced ≥1 ADRs during the study period. In total, 29.8 % of all ADRs was considered caused by PIPs. Persons prescribed with PIPs had more than twofold increased odds of experiencing ADRs (OR 2.47; 95 % CI 1.65–3.69). PIPs were considered the cause of 60 % of ADRs affecting the vascular system, 50 % of ADRs affecting the nervous system and 62.5 % of ADRs resulting in falls.
Conclusion
PIPs are common among the Swedish elderly and are associated with increased odds of experiencing ADRs. Thus, interventions to decrease PIPs may contribute to preventing ADRs, in particular ADRs associated with nervous and vascular disorders and falls.
Journal Article
Registering and Regulating Family Life: The School Thombos in Dutch Sri Lanka
2023
In eighteenth-century, colonial Sri Lanka, the Dutch church kept extensive registers of the local population. These “school thombos” contain individual registration of baptism, marriage, school attendance and death. This article argues that the school thombos reveal moral control over family life by the Dutch East India Company and the Dutch Reformed Church, while offering locals a legal and religious identity to employ in negotiating the Dutch colonial bureaucracy. These rarely studied registers shed new light on Sri Lankan family history and the practices of Dutch colonialism. What do they tell us about conjunctures of locals with colonial religion in eighteenth-century Sri Lanka? The school thombo was an instrument used to register and regulate family life, with specific functions and uses by different actors. This article explores the format, objectives and use of the school thombo. Why was the school thombo created and who were registered in these sources? What were the micro practices of drawing up the school thombo? The article is supported by several case studies that illustrate how the school thombo found its way into family life while demonstrating the value of written identities.
Journal Article
Cancer and Pregnancy: Update of Estimates in Italy by Linking Data from Cancer Registries and Hospital Discharge Records
by
Ballotari, Paola
,
Scambia, Giovanni
,
Bella, Francesca
in
Admission and discharge
,
Breast cancer
,
Cancer
2025
Background/Objectives: The increasing incidence of cancer during pregnancy is a growing public health concern, driven by delayed parenthood and rising maternal age. Pregnancy-associated cancer (PAC) presents complex clinical challenges, necessitating a balance between maternal cancer treatment and fetal safety. Historically considered incompatible with favorable pregnancy outcomes, evidence now suggests that pregnancy can often proceed without affecting cancer prognosis. A 2022 study in Italy provided the first population-based PAC estimates by linking cancer registries (CRs) and hospital discharge records (HDRs). This study aimed to update PAC estimates to 2019, covering 30% of the Italian population and addressing prior data limitations. Methods: A retrospective longitudinal analysis was conducted on women aged 15–49 diagnosed with malignant cancers between 2003 and 2019. Data from 21 Italian CRs were linked with HDRs to identify PAC cases, defined as obstetric hospitalizations occurring for women diagnosed with cancer in our study cohort in the period spanning from one year before to two years after a cancer diagnosis. All malignant cancers, excluding non-melanoma skin cancers, were analyzed. PAC rates were calculated per 1000 pregnancies, and trends were assessed using log-linear and JoinPoint regression models. Results: Among 131,774 women diagnosed with cancer, 6329 PAC cases were identified, with a PAC rate of 1.43 per 1000 pregnancies, consistent with global estimates. Thyroid (24.4%) and breast cancer (23.2%) were the most common. Analyzing the PAC rate by pregnancy outcome, in the period 2015–2019, this increased for both childbirths and miscarriages but decreased for voluntary terminations. Most hospitalizations (54%) occurred pre-diagnosis, peaking at diagnosis, especially for breast cancer (69%). Conclusions: PAC incidence is rising, particularly for live births and miscarriages, underscoring the need for multidisciplinary care and robust epidemiological insights to guide clinical management.
Journal Article
An algorithm provided as initial guidance for reporting registry records and published protocols in systematic reviews
by
Busch, Angela J.
,
Bidonde, Julia
,
Boden, Catherine
in
Algorithms
,
Bias
,
Clinical decision making
2020
Objective: We aim to synthesize the available guidance with existing practices by Cochrane reviewers to generate an algorithm as a starting point in assisting reviewers reporting of registry records and published protocols (TRRs/PPs) use in systematic reviews of interventions. Study Design: We used existing guidance from major review bodies, assessed the current reporting of TRRs/PPs use in a sample of Cochrane reviews, and engaged in critical analysis. Independent reviewers identified and extracted textual excerpts reporting the use of trial registry records and published protocols and codes following a systematic review framework. Based on these elements, and our initial research, we created an algorithm/graphical aid to visualize initial direction. Results: We included 166 Cochrane systematic reviews published between August 2015 and 2016 from 48 review groups. Review authors’ terminology (e.g., ongoing, terminated) varied between and within reviews. Reporting practices were diverse and inconsistent. Conclusions: This is a timely investigation in an era where evidence synthesis informs health and health care decisions. Our proposed algorithm provides initial direction to systematize the reporting of TRR/PP use. We hope that the algorithm generates further discussion to enhance the transparency of TRR/PP reporting and methodological research into the complexities of using protocols in systematic reviews of interventions.
Journal Article