International Journal of Population Data Science最新文献

{"title":"Neurodevelopmental Conditions Amongst Care-Experienced Children: A Population-Based Cohort Study Using Linked Health, Social Care, and Education Records from Wales.","authors":"Helen Hodges, Grace A Bailey, Laura E Cowley, Sarah Thompson, Lucy J Griffiths","doi":"10.23889/ijpds.v11i1.3798","DOIUrl":"https://doi.org/10.23889/ijpds.v11i1.3798","url":null,"abstract":"<p><strong>Background: </strong>Care-experienced children are a vulnerable group with higher exposure to inequalities. Nationwide evidence on the proportion of children with neurodevelopmental conditions (NDCs) and age at diagnosis among those with care experience is limited.</p><p><strong>Methods: </strong>We conducted a retrospective population-based cohort study using linked administrative data from the Secure Anonymised Information Linkage Databank in Wales. NDCs were identified using healthcare and education records among a cohort of children born between 2002 and 2006, followed to age 16. Proportions of NDCs, median age at first recorded NDC and the source of identification were compared between children with and without care experience using chi-square tests and Mann-Whitney U tests.</p><p><strong>Results: </strong>The study included 126,980 children, comprising 123,830 children without care experience, and 3,150 with care experience. 30% of children had a recorded NDC. Proportions were higher among those with care experience compared to those without (5,606 vs 2,888 per 10,000), particularly for learning difficulties, autism spectrum disorder (ASD), and attention deficit hyperactivity disorder (ADHD). Among children with NDCs, median age at recorded diagnosis was younger for those with care experience, particularly ASD (7.4 vs 10.3 years). Source of recorded diagnosis differed by NDC and care experience. For ASD, diagnosis was similarly distributed across health and education among those without care experience, whereas among care-experienced children, more were diagnosed through healthcare. Learning difficulties were predominantly diagnosed in educational settings, while ADHD was predominantly identified through healthcare.</p><p><strong>Conclusion: </strong>Care-experienced children have higher recorded proportions of NDCs and are younger at first recording. These findings likely reflect a combination of higher underlying need, differences in opportunities for identification and monitoring, and differences in the continuity of parental support and advocacy available to care-experienced children. Earlier diagnoses would facilitate more timely access to support, highlighting the potential benefits of multi-agency involvement among those with care experience.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 1","pages":"3798"},"PeriodicalIF":2.2,"publicationDate":"2026-10-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13679042/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149225100","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Leveraging National Health Survey Data for Life-Course Analysis: Socioeconomic Positioning and Adult Obesity in South Korea Using KNHANES.","authors":"Zhansulu Issayeva, Ki-Soo Eun","doi":"10.23889/ijpds.v11i3.3430","DOIUrl":"https://doi.org/10.23889/ijpds.v11i3.3430","url":null,"abstract":"<p><p>This study examines how nationally representative health survey data can be used to operationalise a life-course approach to health inequalities by examining socioeconomic inequalities and adult obesity in South Korea. Drawing on the life-course framework and using data from the ninth wave of the Korea National Health and Nutrition Examination Survey (KNHANES, 2022-2024), the study explores how multiple indicators of socioeconomic status (SES) are associated with obesity among adults aged 19 years and older (n=12,075). South Korea provides a valuable context for life-course research as a high-income country that has undergone rapid socioeconomic and demographic transformation within a single generation. KNHANES is one of the most comprehensive nationally representative health surveys in Asia and includes detailed information on education, income, employment, and demographic characteristics. Although cross-sectional, the dataset enables the examination of socioeconomic positioning and cumulative socioeconomic disadvantage using proxy indicators measured in adulthood. Obesity, defined using the Korean standard body mass index threshold (BMI ≥25 kg/m²), is analysed as a key outcome associated with long-term socioeconomic conditions. The findings reveal clear socioeconomic patterning in adult obesity. Lower educational attainment emerged as the most consistent predictor of obesity, while income and employment status showed more heterogeneous associations after adjustment. These findings are consistent with a life-course perspective in which cumulative socioeconomic conditions and structural constraints may shape obesity risk among adults. By demonstrating how nationally representative survey data can support life-course analysis in the absence of fully linked longitudinal systems, this study highlights the potential of existing population health datasets to inform future data linkage initiatives and comparative research on health inequalities. The findings contribute to ongoing efforts to leverage routinely collected data to support life-course approaches to improving population health and wellbeing.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 3","pages":"3430"},"PeriodicalIF":2.2,"publicationDate":"2026-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13678712/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149229070","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Harnessing routinely collected data for the evaluation of early years interventions: insights from a scoping review of evaluation studies.","authors":"Kate E Mooney, Hollie Henderson, Kelly Hollingsworth, Sarah L Blower, Jenna Graham, Rina Davidson, Leena Ali, Farwa Batool, Dea Nielsen","doi":"10.23889/ijpds.v6i1.3378","DOIUrl":"10.23889/ijpds.v6i1.3378","url":null,"abstract":"<p><strong>Introduction: </strong>Routinely collected data (RCD) describes data about individuals that is documented routinely in practice. Evaluation of early years interventions is imperative for improving child health and development, and utilisation of RCD for research could overcome limitations with traditional study designs, such as participant burden, attrition and disappointment bias. A systematic understanding of if (and how) RCD is being used to evaluate early years interventions is lacking.</p><p><strong>Objectives: </strong>To scope the literature on how RCD is being used to evaluate the effectiveness of early years interventions being delivered in the UK.</p><p><strong>Methods: </strong>The study protocol was registered online (osf.io/cug36). Included studies were interventions for expectant parents and parents of children aged 0-5 years, with a quantitative measure obtained from RCD as an outcome. The study scope was limited to the UK, from January 2000 to November 2024. Completed studies and study protocols were eligible, encompassing grey literature and peer reviewed sources. Medline, Psycinfo and Embase databases were searched via Ovid.</p><p><strong>Results: </strong>32 unique studies published 2009-2024 had used or were planning to use RCD as an outcome in an evaluation of an early years intervention. Most measured more than one outcome, and the most common were birth outcomes and child education. Many studies noted limitations of RCD, particularly being limited by measures available, and fewer noted strengths.</p><p><strong>Conclusion: </strong>Whilst RCD expands evaluation opportunities for measuring multiple relevant parent and child outcomes simultaneously, researchers are limited by what measures are available in RCD. We make specific recommendations to improve the use of RCD in early years evaluations. With careful consideration, RCD can provide useful insights regarding the impacts of early years interventions. This scoping review reveals an emerging methodology that may have increasing importance for evaluating early years policies and interventions, but may currently be constrained by data availability and quality.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 1","pages":"3378"},"PeriodicalIF":2.2,"publicationDate":"2026-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13585133/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148991628","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Standardising Access to Sensitive Data with Machine-Actionable Access Conditions.","authors":"Lucas van der Meer, Ahmad Hesam, Jetze Touber, Ricarda Braukmann, Deborah Thorpe, Emilie Kraaikamp, Tom Emery","doi":"10.23889/ijpds.v11i1.3454","DOIUrl":"10.23889/ijpds.v11i1.3454","url":null,"abstract":"<p><strong>Introduction: </strong>While many countries have invested heavily in secure technical infrastructures such as Trusted Research Environments (TREs), the rules that determine who may access which data, under what conditions, and for which purposes are still expressed primarily as natural language legal and administrative documents, with little or no accompanying machine-readable representation. This limits automation, interoperability, and scalability, particularly for research that spans multiple data holders.</p><p><strong>Objectives: </strong>This paper examines these challenges through the Dutch social science data landscape and presents a framework for standardising access governance using machine-actionable access conditions, with the aim of bridging the gap between secure technical environments and scalable access governance.</p><p><strong>Methods: </strong>Building on the Open Digital Rights Language (ODRL), we propose a library of reusable access condition templates and a Data Access Broker service. The framework was developed through iterative consultation with data holders in the Dutch SSH domain and draws on ongoing developments within the European Open Science Cloud (EOSC) and related data sharing initiatives.</p><p><strong>Results: </strong>We demonstrate that machine-actionable access conditions can operationalise legal and organisational oversight in a transparent, auditable, and interoperable way without replacing it. The proposed framework addresses key challenges identified in the Dutch context - including fragmentation, administrative burden, and inconsistent decision-making - and is applicable across European data infrastructures.</p><p><strong>Conclusions: </strong>The approach does not replace legal or organisational oversight, but operationalises it in a transparent, auditable, and interoperable way. While grounded in the Dutch context and the ODISSEI infrastructure, the challenges addressed are common across Europe. The paper presents a concrete implementation pathway supporting ongoing developments within EOSC and related data sharing initiatives.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 1","pages":"3454"},"PeriodicalIF":2.2,"publicationDate":"2026-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13584987/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148991644","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The need for fully-effective federated analytics of data sources for clinical trials.","authors":"Stella Maris Fabiane, Sharon B Love, David Fisher, Ian R White, Jayne F Tierney, Catherine Dampney, Folkert W Asselbergs, Philip R Quinlan, Macey L Murray, Matthew R Sydes","doi":"10.23889/ijpds.v11i1.3201","DOIUrl":"https://doi.org/10.23889/ijpds.v11i1.3201","url":null,"abstract":"<p><strong>Introduction: </strong>Clinical trials are usually analysed in a single environment allowing for flexible analysis including adjustment or stratification by subgroup: 'one-stage' analysis of individual-level data. Health systems datasets, often distributed across geography and providers, can streamline clinical trials. Data are increasingly accessible in secure data environments (SDEs). Future trial analyses may involve working across multiple SDEs. Row-level data and identifiable data often cannot leave, requiring a 'two-stage approach', where summary data from each SDE are meta-analysed.</p><p><strong>Objective: </strong>To quantify the potential loss of precision and concomitant increases in required sample sizes, and to make recommendations for trial design and conduct, if clinical trial data are split across silos (e.g. SDEs).</p><p><strong>Methods: </strong>Simulations used data from clinical trials in breast cancer, tuberculosis and prostate cancer with time-to-event, binary and continuous outcome measures. Silos were mimicked by 1000 random partitions into 2, 4, 10 and 25 equal silos and 4 unequal silos proportionate to the UK nations. Data were analysed as if the data could be pooled ignoring silo, pooled accounting for silo (one-stage) or not pooled (two-stage). Estimates and standard errors were presented graphically.</p><p><strong>Results: </strong>For all three outcome measure types, standard errors increased while point estimates spread out as more silos were introduced. Small biases occurred for binary and time-to-event outcomes. This did not always appreciably reduce efficiency. However, in one example with time-to-event data and the largest number of silos, a near-doubling of sample size would have been required to pre-emptively offset the loss of efficiency.</p><p><strong>Conclusion: </strong>Any need to use a two-stage analysis approach has a negative effect compared to doing a one-stage analysis. Technical and data governance solutions to support one-stage analyses are recommended.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"6 1","pages":"3201"},"PeriodicalIF":2.2,"publicationDate":"2026-08-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13678711/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149229067","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Gaps in Population Life Course Phenotype Trajectories Underlying Major Noncommunicable Diseases: A Scoping Review.","authors":"Katie McBain, Samuel Kasjan, Ryan Taylor, Dorothea Dumuid, Susan Clifford, Timothy Olds, Melissa Wake","doi":"10.23889/ijpds.v6i1.3346","DOIUrl":"10.23889/ijpds.v6i1.3346","url":null,"abstract":"<p><strong>Introduction: </strong>The life course phenotypic pathways leading to noncommunicable diseases (NCDs) provide information needed to plan and test preventive interventions. However, most NCD-relevant phenotypes are not routinely measured until diagnosis and their pre-clinical trajectories are therefore not in linked population datasets.</p><p><strong>Objectives: </strong>In the context of planning phenotypic collection waves in an Australian early and pre-midlife mega-cohort, we aimed to undertake (1) a scoping review to identify knowledge availability and gaps and (2) a comparative map of trajectories from available data.</p><p><strong>Methods: </strong>We searched PubMed and MEDLINE (September 2024) for trajectory studies on phenotypes underlying NCDs with the highest late life disease burden (excluding cancer and back pain, with no clear precursor phenotypes): cardiovascular, chronic obstructive pulmonary and kidney diseases, diabetes, falls, hearing and vision loss, and dementia. Eligible studies had ≥3 timepoints spanning ≥5 years in childhood or ≥10 years in adulthood. Using the R ggplot package, we fitted loess curves to create lifetime trajectory visualisations in absolute values and units standardised for comparison.</p><p><strong>Results: </strong>From 3770 abstracts, we included 36 studies. Most (n == 19) examined cardiovascular trajectories, collectively spanning ages 5-105 years for blood pressure. Ten studies reported cognition trajectories, but could not be synthesised due to measurement diversity. Twelve studies mapped lung, glucose, kidney or musculoskeletal phenotypes but with discontinuities at varying life stages. No studies tracked vision or hearing trajectories. Our syntheses confirmed some known trajectory patterns, such as peaking of musculoskeletal phenotypes in early adulthood and the rise in cardiovascular and glucose markers beyond healthy ranges from midlife.</p><p><strong>Conclusions: </strong>Our mapping confirmed expected patterns for some phenotypes, but highlighted significant gaps for others on pathways to high-burden NCDs. If long-running population cohorts collectively tracked all major phenotypes over time, embedded real-world or simulated trials could accelerate progress in prevention and treatment across all major NCDs.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 1","pages":"3346"},"PeriodicalIF":2.2,"publicationDate":"2026-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13494735/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148798989","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Who and How Many? Using Integrated Health and Education Data to Study Early Care Experiences of Children in the US.","authors":"Quentin H Riser, Heather L Rouse, Hannah Kim, Cassandra J Dorius, Jessica Bruning, Ji Young Choi, William T Abraham","doi":"10.23889/ijpds.v11i2.3366","DOIUrl":"https://doi.org/10.23889/ijpds.v11i2.3366","url":null,"abstract":"<p><p>Fragmentation across early care and education (ECE) systems in the United States obscures how many children access services and how these experiences shape school readiness. This study leverages Iowa's Integrated Data System for Decision-Making (I2D2), which links health, social determinants of health (SDOH), and education records, to provide one of the first unduplicated counts of ECE participation statewide. Drawing on a matched cohort of 27,321 children eligible for kindergarten in 2017-2018, we examine three aims: (1) describe patterns of centre-based ECE participation; (2) assess associations between child/family characteristics and participation; and (3) evaluate links between ECE and kindergarten suspensions and attendance. Results indicate that 73% of children participated in at least one ECE program prior to school entry, with substantial overlap across public and private preschool, and subsidised or unsubsidised child care. ECE participation varied as a function of poverty, race/ethnicity, maternal education, and cumulative early-life risks. ECE participation was associated with better kindergarten attendance but not suspension. Findings underscore both the promise of integrated data for advancing equity-driven research and the need for policies that target families with the greatest barriers to ECE access.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 2","pages":"3366"},"PeriodicalIF":2.2,"publicationDate":"2026-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13678713/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149225125","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Co-creating an Inclusion, Diversity, Equity, and Accessibility (IDEA) Strategy in a Pan-Canadian Health Data Research Network.","authors":"Morgan Stirling, Laura Bowler, Jeffrey Morgan, David Yang, Lisa Nowlan, Kate Millberry, Kelli Buckreus, Jennifer Hagen, Jannath Naveed, Kim McGrail, Nathan Nickel, Amy Freier","doi":"10.23889/ijpds.v11i1.3429","DOIUrl":"https://doi.org/10.23889/ijpds.v11i1.3429","url":null,"abstract":"<p><p>Inclusion, Diversity, Equity, and Accessibility (IDEA) are increasingly recognised as essential to advancing population health research and addressing structural inequities. Yet, few publications describe how to develop IDEA strategies, leaving organisations with limited guidance on replicable processes. Here, Health Data Research Network Canada (HDRN Canada) details the steps it took to establish its own IDEA Strategy. The strategy was developed through an iterative five-phase process. Key steps included creating a project charter, defining shared governance and consensus-based decision making, and using professional facilitation to foster broad participation across member organisations. Visible executive sponsorship was critical to strategy development and implementation. The resulting strategy identifies four interconnected action areas: Learning and Unlearning, Facilitating IDEA in Research, Cultivating Trust and Reciprocity, and Providing Leadership and Advocacy to embed IDEA in organisational operations and research practices. HDRN Canada's experience demonstrates how a national distributed research network of organisations that work together to support multi-jurisdictional research can use best practices to transform IDEA principles into a concrete, actionable framework. This work offers a transferable model for population health research organisations seeking to integrate IDEA within their organisations and across the research ecosystem.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 1","pages":"3429"},"PeriodicalIF":2.2,"publicationDate":"2026-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13474194/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148763652","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding Inequalities in Adult Social Care in Wales: Protocol for the CARE Lab Linked Administrative Data Study.","authors":"Fiona Victoria Lugg-Widger, Ashley Akbari, Rebecca Cannings-John, Oliver S Cumming, Matthew Curds, Miranda Evans, José-Luis Fernandez, Henrietta Graham, Mala Mann, Melissa Meindl, Abigail Palmer, Lisa Trigg, Nell Warner, Paul Willis, Julie Wych, Simone Willis, Jonathan Scourfield","doi":"10.23889/ijpds.v11i1.3393","DOIUrl":"https://doi.org/10.23889/ijpds.v11i1.3393","url":null,"abstract":"<p><strong>Introduction: </strong>Adult social care in the UK faces increasing demand and persistent inequalities in terms of access and care quality, yet national-level understanding remains limited. The CARE Lab study aims to address these gaps using newly available individual-level routine administrative data for the whole of Wales from the Adults Receiving Care and Support (ARCS) census. This study will explore patterns of care provision, transitions from children's to adult services, and socio-demographic disparities, using linked data to inform service planning and policy.</p><p><strong>Methods: </strong>and analysis This quantitatively-led mixed-methods study comprises five research questions. Quantitative analysis will use ARCS census data, both standalone and linked to health, education, and social care datasets within the Secure Anonymised Information Linkage (SAIL) Databank. Qualitative interviews with people receiving care and support, carers, and professionals will contextualise findings. Key research questions address care patterns, demographic comparisons, regional variation, transitions from child to adult care, and the feasibility of evaluating care models using linked data. Statistical analyses will include descriptive and inferential statistics, propensity score matching, and there will be thematic analysis of qualitative data.</p><p><strong>Ethics: </strong>Ethical approval has been obtained from Cardiff University. Data access approvals will be sought from Welsh Government, SAIL, and the Office for National Statistics. Dissemination will occur through peer-reviewed publications, policy briefings, accessible multimedia outputs, and stakeholder engagement via an action group. The study will also produce a research-ready data asset and recommendations for future data infrastructure development across the UK.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 1","pages":"3393"},"PeriodicalIF":2.2,"publicationDate":"2026-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13492271/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148798939","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Canadian Metadata Catalogue for Health Science Research.","authors":"Allan Garland, Peter Dodek, Kednapa Thavorn, Rita Wissa, Wendy Sligl, Wynona Marleau, M Elizabeth Wilcox","doi":"10.23889/ijpds.v11i1.3372","DOIUrl":"10.23889/ijpds.v11i1.3372","url":null,"abstract":"<p><strong>Introduction: </strong>While Canada is rich in databases useful to support healthcare research, they are widely distributed, often poorly documented, and it is challenging to identify relevant databases, apply for access, and eventually use, link or harmonise the data. Even if the databases needed to address specific questions are known, it is difficult and time-consuming to find the metadata, the \"data about the data\" required to understand the characteristics and data content of these resources. A solution to these challenges is creation of metadata catalogues, which detail metadata for multiple databases, not the actual data.</p><p><strong>Objectives: </strong>Describe a new catalogue including metadata about Canadian medical and non-medical databases' characteristics and variables, and information to assist catalogue users in seeking data access.</p><p><strong>Methods: </strong>Starting with a list of 385 national, provincial and regional databases, a group of physician-investigators, epidemiologists, data scientists and patient partners prioritised databases for inclusion. Metadata cataloguing occurred in steps: (i) description of the database with listing of its characteristics, and when available, (ii) addition of information about collected variables.</p><p><strong>Results: </strong>83 individual databases are documented in the Metadata Catalogue of the Sepsis Canada Network (https://www.maelstrom-research.org/network/sepsis). 57 are registries, 13 are cohort and 13 cross-sectional databases. 16 cover all of Canada, while another 13 cover most of the country; 45 focus on a single province. For 33 databases (38%) the catalogue includes detailed information about variables collected.</p><p><strong>Conclusions: </strong>This metadata catalogue includes databases collecting information spanning the continuum of medical care, non-medical data, and determinants of health. It is freely available online and extensively searchable. It can facilitate implementation of a wide range of research initiatives into medical conditions, medical care, and outcomes.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"6 3","pages":"3372"},"PeriodicalIF":2.2,"publicationDate":"2026-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13386634/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148550733","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}