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We sought to assess the current status of global data on death registration and to examine several indicators of data completeness and quality. We summarized the availability of death registration data by year and country. Indicators of data quality were assessed for each country and included the timeliness, completeness and coverage of registration and the proportion of deaths assigned to ill-defined causes. At the end of 2003 data on death registration were available from 115 countries, although they were essentially complete for only 64 countries. Coverage of death registration varies from close to 100% in the WHO European Region to less than 10% in the African Region. Only 23 countries have data that are more than 90% complete, where ill-defined causes account for less than 10% of total of causes of death, and where ICD-9 or ICD-10 codes are used. There are 28 countries where less than 70% of the data are complete or where ill-defined codes are assigned to more than 20% of deaths. Twelve high-income countries in western Europe are included among the 55 countries with intermediate-quality data. Few countries have good-quality data on mortality that can be used to adequately support policy development and implementation. There is an urgent need for countries to implement death registration systems, even if only through sample registration, or enhance their existing systems in order to rapidly improve knowledge about the most basic of health statistics: who dies from what?

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.

Background Standardization of procedures for data abstraction by cancer registries is fundamental for cancer surveillance, clinical and policy decision-making, hospital benchmarking, and research efforts. The objective of the current study was to evaluate adherence to the four components (completeness, comparability, timeliness, and validity) defined by Bray and Parkin that determine registries’ ability to carry out these activities to the hospital-based National Cancer Database (NCDB). Methods Tbis study used data from U.S. Cancer Statistics, the official federal cancer statistics and joint effort between the Centers for Disease Control and Prevention (CDC) and the National Cancer Institute (NCI), which includes data from National Program of Cancer Registries (NPCR) and Surveillance, Epidemiology, and End Results (SEER) to evaluate NCDB completeness between 2016 and 2020. The study evaluated comparability of case identification and coding procedures. It used Commission on Cancer (CoC) standards from 2022 to assess timeliness and validity. Results Completeness was demonstrated with a total of 6,828,507 cases identified within the NCDB, representing 73.7% of all cancer cases nationwide. Comparability was followed using standardized and international guidelines on coding and classification procedures. For timeliness, hospital compliance with timely data submission was 92.7%. Validity criteria for re-abstracting, recording, and reliability procedures across hospitals demonstrated 94.2% compliance. Additionally, data validity was shown by a 99.1% compliance with histologic verification standards, a 93.6% assessment of pathologic synoptic reporting, and a 99.1% internal consistency of staff credentials. Conclusion The NCDB is characterized by a high level of case completeness and comparability with uniform standards for data collection, and by hospitals with high compliance, timely data submission, and high rates of compliance with validity standards for registry and data quality evaluation.

The Danish Medical Birth Register was established in 1973. It is a key component of the Danish health information system. The register enables monitoring of the health of pregnant women and their offspring, it provides data for quality assessment of the perinatal care in Denmark, and it is used extensively for research. The register underwent major changes in construction and content in 1997, and new variables have been added during the last 20 years. The aim was to provide an updated description of the register focusing on structure, content, and coverage since 1997. The register includes data on all births in Denmark and comprises primarily of data from the Danish National Patient Registry supplemented with forms on home deliveries and stillbirths. It contains information on maternal age provided by the Civil Registration System. Information on pre-pregnancy body mass index and smoking in first trimester is collected in early pregnancy (first antenatal visit). The individual-level data can be linked to other Danish health registers such as the National Patient Registry and the Danish National Prescription Registry. The register informs several other registers/databases such as the Danish Twin Registry and the Danish Fetal Medicine Database. Aggregated data can be publicly accessed on the Danish Health Data Authority web page (www.esundhed.dk/sundhedsregistre/MFR). Researchers can obtain access to individual-level pseudoanonymised data via servers at Statistics Denmark and the Danish Health Data Authority.

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.

Introduction: Individual-level data on all prescription drugs sold in Danish community pharmacies has since 1994 been recorded in the Register of Medicinal Products Statistics of the Danish Medicines Agency. Content: The register subset, termed the Danish National Prescription Registry (DNPR), contains information on dispensed prescriptions, including variables at the level of the drug user, the prescriber, and the pharmacy. Validity and coverage: Reimbursement-driven record keeping, with automated bar-code-based data entry provides data of high quality, including detailed information on the dispensed drug. Conclusion: The possibility of linkage with many other nationwide individual-level data sources renders the DNPR a very powerful pharmacoepidemiological tool.

Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, facilitate the planning of appropriate clinical trials, improve patient care, and support healthcare management. They constitute a key information system that supports the activities of European Reference Networks (ERNs) on rare diseases. A rapid proliferation of RD registries has occurred during the last years and there is a need to develop guidance for the minimum requirements, recommendations and standards necessary to maintain a high-quality registry. In response to these heterogeneities, in the framework of RD-Connect, a European platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research, we report on a list of recommendations, developed by a group of experts, including members of patient organizations, to be used as a framework for improving the quality of RD registries. This list includes aspects of governance, Findable, Accessible, Interoperable and Reusable (FAIR) data and information, infrastructure, documentation, training, and quality audit. The list is intended to be used by established as well as new RD registries. Further work includes the development of a toolkit to enable continuous assessment and improvement of their organizational and data quality.

Recent initiatives promoted results reporting on clinical trials registries to improve transparency and reduce publication bias. However, local reports suggest that results reporting on registries is often inadequate, limiting their usefulness for evidence synthesis. We aimed to 1) provide an overview of results reporting practices across clinical trials registries globally, 2) identify barriers and facilitators to reporting and using results from trials registries, and 3) develop recommendations to improve reporting and usability of results in trials registries. Three-part mixed methods study. Part 1: Descriptive analysis of results reporting practices for randomized controlled trials (RCTs) starting between 2010 and 2022 across six trials registries (one from each World Health Organization region), with an in-depth analysis focusing on reporting formats and accessibility. Part 2: Two separate online surveys targeting trial registrants and evidence users. Part 3: Discussion among author group to generate recommendations. Part 1: Our sample included 201,265 RCTs, with 17% (33,163 trials) reporting some form of results on a registry. A subset showed 63% of posted results accessible in the registry record, with 64% to 98% of results data available in a reusable format. Part 2: 86% (194/225) of registrants were aware of registry results reporting possibilities, but time, effort, and fear of publishing interference were barriers. For evidence users, 51% (36/70) had used registry results, with barriers including mistrust of non–peer-reviewed data and difficulty locating results. Part 3: Recommendations include standardizing registry interfaces, addressing misconceptions, and fostering trust in registry-reported results. Results reporting practices on registries are increasing. Improving these requires better infrastructure, policies, training, and funding. With adequate support, registries can become essential for transparent and efficient evidence dissemination, enhancing research quality, and reducing duplication. Clinical trials registries are online databases where researchers register medical studies and share their status, details, and results. These registries exist globally and allow researchers to track ongoing studies and emerging evidence on a topic. They also enable the public to identify trials they may be interested to participate in. Although regulations require researchers to share study results on registries within a year of study completion, only a fraction of results are currently available. Our project 1) evaluated the reporting of study results across different trials registries, 2) surveyed individuals involved in reporting and using study findings from registries, and 3) developed recommendations to improve availability and usefulness of these results. We found that increasing trust in registry-reported results, improving registry systems (ie, interfaces, processes), and providing better guidance are necessary steps to enhance reporting and use of registry results. Implementing these changes will make it easier to verify study findings, provide accurate guidelines to physicians, and improve patient care. •Better systems are needed to report and access clinical trial results in registries.•Reporting rates are low, but reported results are often usable for analysis.•Low trust in registry data limits their use in evidence synthesis efforts.•Key actions are required to promote the value of trial registry result reporting.•Stronger policies, training, and funding can boost reporting and trust.

We aimed to examine a) the policies of national and international clinical trial registries regarding observational studies; b) the time trends of observational study registration; and c) the published arguments for and against observational study registration. Scoping review of registry practices and published arguments. We searched the websites and databases of all 19 members of the World Health Organization's Registry Network to identify policies relating to observational studies and the number of observational studies registered annually from the beginning of the registries to 2022. Regarding documents with arguments, we searched Medline, Embase, Google Scholar, and top medical and epidemiological journals from 2009 to 2023. We classified arguments as “main” based on the number (n ≥ 3) of documents they occurred in. Of 19 registries, 15 allowed observational study registration, of which seven (35%) had an explicit policy regarding what to register and two (11%) about when to register. The annual number of observational study registrations increased over time in all registries; for example, ClinicalTrials.gov increased from 313 in 1999 to 9775 in 2022. Fifty documents provided arguments concerning observational study registration: 31 argued for, 18 against, and one was neutral. Since 2012, 19 out of 25 documents argued for. We classified nine arguments as main: five for and four against. The two most prevalent arguments for were the prevention of selective reporting of outcomes (n = 16) and publication bias (n = 12), and against were that it will hinder exploration of new ideas (n = 17) and it will waste resources (n = 6). Few registries have policies regarding observational studies; an increasing number of observational studies were registered; there was a lively debate on the merits of registration of observational studies, which, since 2012, seems to converge toward proregistration. •Only 7 (35%) study registries had an explicit policy for observational studies.•Only 2 (11%) registries specified when to register observational studies.•The annual number of observational study registration increased in all registries.•The debate on observational study registration converges toward pro-registration.

Danish registers contain information on many important health and social issues. Because all Danish citizens have a unique personal identification number, linkage at the individual level between these nationwide registers and other data sources is possible and feasible. In this paper we briefly introduce selected Danish registers and the data structure and requirements for getting access to data at Statistics Denmark, which is the main provider of register data. We introduce the Danish Data Archive and briefly present the Act on Processing of Personal Data, which is the legal foundation for analyses of register-based data in Denmark.