Transthyretin amyloidosis cardiomyopathy (ATTR‑CM) is a rare, progressive, and often underdiagnosed heart condition. It can lead to restrictive cardiomyopathy and heart failure, with patients frequently misdiagnosed or diagnosed late due to non‑specific symptoms and the absence of disease‑specific diagnostic codes in Europe.
Understanding its true burden requires more than hospital records alone—it demands a clinically rich, linked data environment that captures patient journeys across multiple healthcare settings.
Research challenge
In Europe, no specific diagnostic codes exist for ATTR-CM. Traditional claims or hospital databases often miss cases, misclassify amyloidosis subtypes, or overlook the cardiovascular context. Thus, the challenge was two-fold:
- Accurate identification of ATTR-CM patients in the absence of a dedicated ICD code.
- Validation of these cases using multi source clinical data to differentiate ATTR-CM from other amyloidosis forms (e.g., AL amyloidosis, AA amyloidosis, amyloid angiopathy)
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