The Healthcare Amyloidosis European Registry (HEAR): design of a national registry with a European extension strategy, and foundation of the F-CRIN GRACE network.

ABSTRACT:

Background

Cardiac amyloidosis (CA) is a rare disease that can lead to poor quality of life, conduction disorders, arrhythmia, heart failure, and even death. Fortunately, specific treatments that can modify the natural history of the disease and the disease outcomes are now available. However, data on the prevailing patient management procedures and long-term outcomes of CA are scarce.

Objective

The Healthcare Amyloidosis European Registry (HEAR) is 34-centre registry initiated in France and structured for European expansion through the French Clinical Research Infrastructure Network's Group for Research on Amyloidosis and Care Excellence and the European Clinical Research Infrastructure Network. We expect to include 8500 patients between January 2021 and December 2027.

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SUBMITTER: Reant P 

PROVIDER: S-EPMC12557864 | biostudies-literature | 2025 Oct

REPOSITORIES: biostudies-literature