Utilizing Combined Claims and Clinical Datasets for Research Among Potential Cases of Rare Diseases

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Author(s): Kevin J. Bennett (University of South Carolina, USA), Joshua Mann (University of Mississippi Medical Center, USA)and Lijing Ouyang (Centers for Disease Control & Prevention, USA)
Copyright: 2020
Pages: 14
Source title: Data Analytics in Medicine: Concepts, Methodologies, Tools, and Applications
Source Author(s)/Editor(s): Information Resources Management Association (USA)
DOI: 10.4018/978-1-7998-1204-3.ch054

Keywords: Data Analysis & Statistics / Library & Information Science / Medical Information Science Reference / Medical Technologies

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Abstract

With data quality issues with administrative claims and medically derived datasets, a dataset derived from a combination of sources may be more effective for research. The purposes of this article is to link an EMR-based data warehouse with state administrative data to study individuals with rare diseases; to describe and compare their characteristics; and to explore research with the data. These methods included subjects with diagnosis codes for one of three rare diseases from the years 2009-2014; Spina Bifida, Muscular Dystrophy, and Fragile X Syndrome. The results from the combined data provides additional information that each dataset, by itself, would not contain. The simultaneous examination of data such as race/ethnicity, physician and other outpatient visit data, charges and payments, and overall utilization was possible in the combined dataset. It is also discussed that combining such datasets can be a useful tool for the study of populations with rare diseases.

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Utilizing Combined Claims and Clinical Datasets for Research Among Potential Cases of Rare Diseases

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