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Quality control and harmonization of data is a vital and challenging undertaking for any successful data coordination center and a responsibility shared between the multiple sites that produce, integrate, and utilize the data. Here we describe a coordinated effort between scientists and data managers in the Cancer Family Registries to implement a data governance infrastructure consisting of both organizational and technical solutions. The technical solution uses a rule-based validation system [...]

To address the challenge of balancing privacy with the need to create cross-site research registry records on individual patients, while matching the data for a given patient as he or she moves between participating sites. To evaluate the strategy of generating anonymous identifiers based on real identifiers in such a way that the chances of a shared patient being accurately identified were maximized, and the chances of incorrectly joining two [...]

To study ontology modularization techniques when applied to SNOMED CT in a scenario in which no previous corpus of information exists and to examine if frequency-based filtering using MEDLINE can reduce subset size without discarding relevant concepts.

National organizations historically focused on increasing use of effective services are now attempting to identify and discourage use of low-value services. Electronic health records (EHRs) could be used to measure use of low-value services, but few studies have examined this. The aim of the study was to: (1) determine if EHR data can be used to identify women eligible for an extended Pap testing interval; (2) determine the proportion of [...]

To explore the feasibility of using statistical text classification to automatically detect extreme-risk events in clinical incident reports.

Systematic approaches to dealing with missing values in record linkage are still lacking. This article compares the ad-hoc treatment of unknown comparison values as 'unequal' with other and more sophisticated approaches. An empirical evaluation was conducted of the methods on real-world data as well as on simulated data based on them.

Electronically 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.

Although the penetration of electronic health records is increasing rapidly, much of the historical medical record is only available in handwritten notes and forms, which require labor-intensive, human chart abstraction for some clinical research. The few previous studies on automated extraction of data from these handwritten notes have focused on monolithic, custom-developed recognition systems or third-party systems that require proprietary forms.

Many aberration detection algorithms are used in infectious disease surveillance systems to assist in the early detection of potential outbreaks. In this study, we explored a novel approach to adjusting aberration detection algorithms to account for the impact of seasonality inherent in some surveillance data. By using surveillance data for hand-foot-and-mouth disease in Shandong province, China, we evaluated the use of seasonally-adjusted alerting thresholds with three aberration detection methods (C1 [...]

Failure to reach research subject recruitment goals is a significant impediment to the success of many clinical trials. Implementation of health-information technology has allowed retrospective analysis of data for cohort identification and recruitment, but few institutions have also leveraged real-time streams to support such activities.