ArticleJournal of the American Medical Informatics Association : JAMIA2012
Evaluation of record linkage between a large healthcare provider and the Utah Population Database.
Article in Journal of the American Medical Informatics Association : JAMIA, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
40 citing papers in PubMed, 1 synthesis or guideline pooled it.
- GUILD: GUidance for Information about Linking Data sets.Journal of public health (Oxford, England) · 2018Guideline
- Childhood central nervous system tumors and leukemia: Incidence and familial risk. A comparative population-based study in Utah and Norway.Pediatric blood & cancer · 2020Trial
- Long-term survivors of childhood bone and soft tissue sarcomas are at risk of hospitalization.Pediatric blood & cancer · 2017Trial
- Familial Risk of Hashimoto's Thyroiditis in a Large Genealogical Database.The Journal of clinical endocrinology and metabolism · 2025Article
- Article
- Neighborhood built environment, obesity, and diabetes: A Utah siblings study.SSM - population health · 2024Article
- Linking Patient Encounters across Primary and Ancillary Electronic Health Record Systems: A Comparison of Two Approaches.ACI open · 2024Article
- Familial Associations of Prevalence and Cause-Specific Mortality for Thoracic Aortic Disease and Bicuspid Aortic Valve in a Large-Population Database.Circulation · 2023Observational
- Familial aggregation of stillbirth: A pedigree analysis of a matched case-control study.BJOG : an international journal of obstetrics and gynaecology · 2023Article
- Establishing a framework for privacy-preserving record linkage among electronic health record and administrative claims databases within PCORnetBMC research notes · 2022Article
- The history and geographic distribution of a KCNQ1 atrial fibrillation risk allele.Nature communications · 2021Article
- Semen parameter thresholds and time-to-conception in subfertile couples: how high is high enough?Human reproduction (Oxford, England) · 2021Article
- Low accuracy of self-reported family history of melanoma in high-risk patients.Familial cancer · 2021Review
- Harnessing Population Pedigree Data and Machine Learning Methods to Identify Patterns of Familial Bladder Cancer Risk.Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology · 2020Article
- Fine Particulate Matter and Respiratory Healthcare Encounters among Survivors of Childhood Cancers.International journal of environmental research and public health · 2019Article
- A Method for Integrating Healthcare Provider Organization and Research Sponsor Systems and Workflows to Support Large-Scale Studies.AMIA Joint Summits on Translational Science proceedings. AMIA Joint Summits on Translational Science · 2019Article
- Early Childhood Inpatient Costs of Critical Congenital Heart Disease.The Journal of pediatrics · 2018Article
- Opportunities for life course research through the integration of data across Clinical and Translational Research Institutes.Journal of clinical and translational science · 2018Article
- Familial Cancer Clustering in Urothelial Cancer: A Population-Based Case-Control Study.Journal of the National Cancer Institute · 2018Article
- An investigation of survivorship clinic attendance among childhood cancer survivors living in a five-state rural region.Journal of cancer survivorship : research and practice · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
objectiveElectronically linked datasets have become an important part of clinical research. Information from multiple sources can be used to identify comorbid conditions and patient outcomes, measure use of healthcare services, and enrich demographic and clinical variables of interest. Innovative approaches for creating research infrastructure beyond a traditional data system are necessary. MATERIALS AND
methodsRecords from a large healthcare system's enterprise data warehouse (EDW) were linked to a statewide population database, and a master subject index was created. The authors evaluate the linkage, along with the impact of missing information in EDW records and the coverage of the population database. The makeup of the EDW and population database provides a subset of cancer records that exist in both resources, which allows a cancer-specific evaluation of the linkage.
resultsAbout 3.4 million records (60.8%) in the EDW were linked to the population database with a minimum accuracy of 96.3%. It was estimated that approximately 24.8% of target records were absent from the population database, which enabled the effect of the amount and type of information missing from a record on the linkage to be estimated. However, 99% of the records from the oncology data mart linked; they had fewer missing fields and this correlated positively with the number of patient visits. DISCUSSION AND
conclusionA general-purpose research infrastructure was created which allows disease-specific cohorts to be identified. The usefulness of creating an index between institutions is that it allows each institution to maintain control and confidentiality of their own information.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.