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International Cardiac Amyloidosis Registry

Recruitingn/aAges 18 Years - anyAllLeiden University Medical Center
NCT06894290 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

Cardiac amyloidosis is a relatively rare disease. However, with the newer imaging techniques that have become available to us in recent years, determining the diagnosis is becoming more common. There are several variants. Each variant involves protein accumulation between heart muscle cells. This leads to the heart stiffening and, as a result, the heart has a hard time filling. This can lead to heart failure with complaints such as fluid retention, cardiac arrhythmias such as atrial fibrillation, conduction abnormalities that sometimes require a pacemaker, and clot formation in the heart that can cause a stroke and narrowing of the aortic valve. Getting the correct diagnosis is important because specific treatment is available in some cases for the different variants of cardiac amyloidosis. This research is needed to better understand the course of this disease profile and which patients

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📋 Eligibility rules (as published)
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
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What it tests

  • Not listed
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Where

6 sites
AZ St Jan
Bruges, Belgium
UZ Antwerpen
Edegem, Belgium
Fondazione Policlinico Universitario 'A. Gemelli' IRCCS, Roma
Roma, Italy
Kitasato University Hospital
Sagamihara, Japan
Leiden University Medical Center
Leiden, Netherlands
Santa Marta Hospital, CHULC, Lisbon
Lisbon, Portugal
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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