When real-world data miss rare diseases
Abstract
Because ICD-10-CM omits multiple dermatology-relevant subcodes, several well-defined rare skin diseases cannot be identified in widely used US real-world data systems. This Perspective discusses how these omissions distort the evidence base as real-world data increasingly inform dermatological research and guidance, and contrasts this with approaches used in the UK and other health systems. Practical pathways to improve phenotypic resolution for rare diseases are outlined.
Fields of Study & Subjects
Medical Coding and Health Information
Electronic Health Records Systems
Machine Learning in Healthcare
Publication details
- Journal / source
- British Journal of Dermatology
- Volume
- 194
- Issue
- 4
- Pages
- 785–787
- Publication date
- 10 January 2026
- Language
- EN