ArticleInternational journal of population data science2020
Prevalence of Down's Syndrome in England, 1998-2013: Comparison of linked surveillance data and electronic health records.
Article in International journal of population data science, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
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Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Prevalence and Etiology of Strabismus in Down Syndrome: A Systematic Review and Meta-Analysis with a Focus on Ethnic Differences in the Esotropia/Exotropia Ratio.Ophthalmic epidemiology · 2025Pooled it
- Impact of data sources and ascertainment methods on reporting paediatric genetic condition prevalence: A scoping review.Health information management : journal of the Health Information Management Association of Australia · 2026Article
- Phenotyping Neurodisability in Hospital Records in England: A National Birth Cohort Using Linked Administrative Data.Paediatric and perinatal epidemiology · 2025Article
- A statewide system for maternal-infant linked longitudinal surveillance: Indiana's model for improving maternal and child health.International journal of population data science · 2024Article
- Generating synthetic identifiers to support development and evaluation of data linkage methods.International journal of population data science · 2024Article
- Salivary microbiome in children with Down syndrome: a case-control study.BMC oral health · 2022Article
- Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review.American journal of medical genetics. Part A · 2022Article
- A dPCR-NIPT assay for detections of trisomies 21, 18 and 13 in a single-tube reaction-could it replace serum biochemical tests as a primary maternal plasma screening tool?Journal of translational medicine · 2022Article
- Heparin versus citrate anticoagulation for continuous renal replacement therapy in intensive care: the RRAM observational study.Health technology assessment (Winchester, England) · 2022Observational
- Prevalence of structural birth defects among infants with Down syndrome, 2013-2017: A US population-based study.Birth defects research · 2021Article
- Assessing data linkage quality in cohort studies.Annals of human biology · 2020Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
introductionDisease registers and electronic health records are valuable resources for disease surveillance and research but can be limited by variation in data quality over time. Quality may be limited in terms of the accuracy of clinical information, of the internal linkage that supports person-based analysis of most administrative datasets, or by errors in linkage between multiple datasets.
objectivesBy linking the National Down Syndrome Cytogenetic Register (NDSCR) to Hospital Episode Statistics for England (HES), we aimed to assess the quality of each and establish a consistent approach for analysis of trends in prevalence of Down's syndrome among live births in England.
methodsProbabilistic record linkage of NDSCR to HES for the period 1998-2013 was supported by linkage of babies to mothers within HES. Comparison of prevalence estimates in England were made using NDSCR only, HES data only, and linked data. Capture-recapture analysis and quantitative bias analysis were used to account for potential errors, including false positive diagnostic codes, unrecorded diagnoses, and linkage error.
resultsAnalyses of single-source data indicated increasing live birth prevalence of Down's Syndrome, particularly in the analysis of HES. Linked data indicated a contrastingly stable prevalence of 12.3 (plausible range: 11.6-12.7) cases per 10 000 live births.
conclusionCase ascertainment in NDSCR improved slightly over time, creating a picture of slowly increasing prevalence. The emerging epidemic suggested by HES primarily reflects improving linkage within HES (assignment of unique patient identifiers to hospital episodes). Administrative data are valuable but trends should be interpreted with caution, and with assessment of data quality over time. Data linkage with quantitative bias analysis can provide more robust estimation and, in this case, stronger evidence that prevalence is not increasing. Routine linkage of administrative and register data can enhance the value of each.
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