Validity of International Classification of Diseases Codes for Sickle Cell Trait and Sickle Cell Disease

  • Kabir O. OlaniranEmail author
  • Harish Seethapathy
  • Sophia H. Zhao
  • Andrew S. Allegretti
  • Sahir Kalim
  • Sagar U. Nigwekar
Concise Research Report


Sickle cell trait (SCT) is increasingly being studied as a risk factor for diseases disproportionately affecting African Americans.1 Research into sickle cell disease (SCD) is also increasing due to poor outcomes in this understudied condition.2 Most sickle cell research uses hemoglobin electrophoresis or genetic data to identify patients. However, such information is not always collected or available in clinical care records, limiting adequate sample sizes in large databases with useful outcomes. The utility of International Classification of Diseases (ICD) codes to determine sickle cell status has not been examined in detail. We sought to determine sickle cell prevalence and the validity of sickle cell ICD codes in African American adults in a large multi-hospital healthcare system.


We reviewed all adult African American patients with a hemoglobin electrophoresis in the patients’ data registry of Partners Healthcare, Boston Massachusetts. Hemoglobin...


sickle cell trait sickle cell disease ICD validity 



K.O.O. is supported by the Ben J. Lipps Research Fellowship Award of the American Society of Nephrology. A.S.A is supported by the American Heart Association Career Development Award 18CDA34110131. S.U.N. is supported by the National Center for Research Program Winter 2015 Fellow-to-Faculty Transition Award 15FTF25980003 from the American Heart Association and by the KL2/Catalyst Medical Research Investigator Training award TR001100 (an appointed KL2 award) from Harvard Catalyst, the Harvard Clinical and Translational Science Center (National Center for Research Resources, and the National Center for Advancing Translational Sciences, National Institutes of Health). S.K. is supported by National Institutes of Health award K23 DK 106479.

Compliance with Ethical Standards

This study was approved by the Institutional Review Board at Partners Healthcare, Boston Massachusetts and the need for informed consent was waived.

Conflict of Interest

The authors have no conflicts of interest to declare.


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Copyright information

© Society of General Internal Medicine 2019

Authors and Affiliations

  1. 1.Division of Nephrology, Massachusetts General Hospital Harvard Medical SchoolBostonUSA
  2. 2.Division of Nephrology University of Texas Southwestern Medical CenterDallasUSA

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