For two rare neurological conditions with low diagnosis awareness, IQVIA developed country-specific algorithms to find “hidden” patients often miscoded under broader categories. The four-step approach included literature reviews, coding research, clinician validation, and cohort analysis. Algorithms were tailored per country and validated against definitive diagnosis groups. Findings showed similarities in characteristics between coded and algorithm-based cohorts, with off-label drug use sometimes widening patient pools. The validated models now provide a strong foundation for retrospective real-world studies.

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