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

Details

• Alternative Title:
  Int J Healthc Inf Syst Inform
• Personal Author:
  Bennett, Kevin J. ; Mann, Joshua ; Ouyang, Lijing
• Description:
  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.
• Subjects:
  Article Health Information Technology Persons With Disability
• Source:
  Int J Healthc Inf Syst Inform. 13(2):1-12
• Pubmed ID:
  32913425
• Pubmed Central ID:
  PMC7479970
• Document Type:
  Journal Article
• Funding:
  CC999999/ImCDC/Intramural CDC HHS/United States
• Volume:
  13
• Issue:
  2
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha256:bb5cdd2ce7923200de41e5510f906d335d40f52d9135468ecc48999462febf3c
• Download URL:
  https://stacks.cdc.gov/view/cdc/94024/cdc_94024_DS1.pdf
• File Type:
  [PDF - 459.06 KB ]