What is it about?
To measure the impact on and associations of celiac disease in the population we need to be know with a high degree of certainty who has the disease. This study compared the diagnostic codes for celiac disease contained in the Danish National Register with the actual diagnostic test information for pathology serology and HLA results.
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Why is it important?
This study shows that while a register derived codes can be a useful source to help find cases we can't rely entirely on accuracy of those codes. We use a single code and maximize sensitivity or 2 codes to increase specificity but ultimately some other means of validation by primary source data is needed.
Perspectives
The work of epidemiology is highly dependent on accurate case definition. In many cases with computer access to large registers one can undertake research on the impact of diseases like celiac disease however Stine and her colleagues have by a Herculean task shown that validation by direct inspection of source material is necessary to validate the case designation. In addition to informing the field about the pitfalls of register based data the now validated cohort provides a very valuable resource for future work.
Joseph Murray
Mayo Foundation
Read the Original
This page is a summary of: Validation of celiac disease diagnoses recorded in the Danish National Patient Register using duodenal biopsies, celiac disease-specific antibodies, and human leukocyte-antigen genotypes, Clinical Epidemiology, December 2016, Dove Medical Press,
DOI: 10.2147/clep.s122300.
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