Genetics
Checking 4,142 MS Clinical Records Against a Research Cohort19, Sep 2026
Alper Bülbül
19, Sep 2026
This post covers Damotte, Lizee and colleagues' study in Multiple Sclerosis Journal, which identified 4,142 MS patients in the UCSF electronic record system, extracted clinical measures from free-text notes, and compared them against a prospective research cohort for patients present in both. It covers how the patient-finding algorithm trades completeness for precision, the per-variable accuracy of extraction with year of onset as the weakest, the high agreement for EDSS and walking speed, the finding that 28.6% of research-defined secondary progressive patients remain recorded as relapsing-remitting in the clinic, the reproduction of known MS natural history, and the information bias toward moderately disabled patients that the authors measure themselves.
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