{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,10]],"date-time":"2026-06-10T16:13:21Z","timestamp":1781108001099,"version":"3.54.1"},"reference-count":0,"publisher":"IGI Global Scientific Publishing","issue":"2","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2018,4,1]]},"abstract":"<p>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.<\/p>","DOI":"10.4018\/ijhisi.2018040101","type":"journal-article","created":{"date-parts":[[2018,1,29]],"date-time":"2018-01-29T12:53:00Z","timestamp":1517230380000},"page":"1-12","source":"Crossref","is-referenced-by-count":6,"title":["Utilizing Combined Claims and Clinical Datasets for Research Among Potential Cases of Rare Diseases"],"prefix":"10.4018","volume":"13","author":[{"given":"Kevin J.","family":"Bennett","sequence":"first","affiliation":[{"name":"University of South Carolina, Columbia, SC, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joshua","family":"Mann","sequence":"additional","affiliation":[{"name":"University of Mississippi Medical Center, Jackson, MS, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lijing","family":"Ouyang","sequence":"additional","affiliation":[{"name":"Centers for Disease Control & Prevention, Atlanta, GA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"2432","container-title":["International Journal of Healthcare Information Systems and Informatics"],"original-title":[],"language":"ng","link":[{"URL":"https:\/\/www.igi-global.com\/viewtitle.aspx?TitleId=198490","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,5,6]],"date-time":"2022-05-06T14:20:55Z","timestamp":1651846855000},"score":1,"resource":{"primary":{"URL":"https:\/\/services.igi-global.com\/resolvedoi\/resolve.aspx?doi=10.4018\/IJHISI.2018040101"}},"subtitle":[""],"short-title":[],"issued":{"date-parts":[[2018,4,1]]},"references-count":0,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2018,4]]}},"URL":"https:\/\/doi.org\/10.4018\/ijhisi.2018040101","relation":{},"ISSN":["1555-3396","1555-340X"],"issn-type":[{"value":"1555-3396","type":"print"},{"value":"1555-340X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,4,1]]}}}