International Cardiac Amyloidosis Registry

Launched by LEIDEN UNIVERSITY MEDICAL CENTER · Mar 18, 2025

Keywords

ClinConnect Summary

The International Cardiac Amyloidosis Registry is a clinical trial aimed at better understanding cardiac amyloidosis, a rare condition where abnormal proteins build up in the heart, making it stiff and less effective at pumping blood. This can lead to serious problems like heart failure, irregular heartbeats, and even strokes. The researchers want to learn how this disease progresses in patients, how often they need hospital care, and if certain tests can help predict how quickly someone's health might decline. They are also looking to determine which patients could benefit from specific drug treatments available for some forms of cardiac amyloidosis.

To participate in this study, individuals must be diagnosed with either AL or ATTR cardiac amyloidosis, based on specific medical tests and evaluations. Participants should be between the ages of 65 and 74 and able to understand the study details to provide informed consent. By joining this trial, participants will help improve knowledge about cardiac amyloidosis and potentially receive personalized treatment options based on their specific condition.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• Diagnosed with AL or ATTR cardiac amyloidosis following the recommendations of the European Society of Cardiology \[1\] which include:
• • Signs and symptoms, ECG, echo or CMR suggestive of cardiac amyloidosis and
• • negative hematological test and bone scintigraphy Perugini stage 2 or 3 (is diagnostic for ATTR amyloidosis)
• • negative hematological test and bone scintigraphy Perugini stage 1 and histological confirmation (either extracardiac or cardiac biopsy) with subtyping of ATTR amyloidosis
• • positive hematological test and bone scintigraphy Perugini stage 1-3 and histological confirmation (usually cardiac biopsy) with subtyping of ATTR amyloidosis
• • positive hematological rest and bone scintigraphy Perugini stage 0, MRI consistent with amyloidosis and histological confirmation (either extracardiac or cardiac biopsy) with subtyping AL amyloidosis
• Exclusion Criteria:
• • Unable to provide informed consent due to insufficient language proficiency or intellectual capabilities