Registry for patients with cardiac amyloidosis

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational registry aims to collect real-world data on the diagnostic process, management, and outcomes of patients diagnosed with cardiac AL or ATTR amyloidosis. By evaluating the progression of the disease and identifying clinical and echocardiographic predictors of prognosis, the study seeks to enhance understanding of this underdiagnosed condition. Patients over 18 years old who meet specific diagnostic criteria will be included, and their health outcomes will be monitored over time. The study will help inform treatment strategies and improve patient care.

Why it matters

Who can join: the full rules

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

Where it's running

• AZ St Jan
  Bruges, Belgium Recruiting
• UZ Antwerpen
  Edegem, Belgium Recruiting
• Fondazione Policlinico Universitario 'A. Gemelli' IRCCS, Roma
  Roma, Italy Recruiting
• Kitasato University Hospital
  Sagamihara, Japan Recruiting
• Leiden University Medical Center
  Leiden, Netherlands Recruiting
• Santa Marta Hospital, CHULC, Lisbon
  Lisbon, Portugal Recruiting

Study contacts

• Principal investigator: Nina Ajmone Marsan, MD, PhD — Leiden University Medical Center
• Study coordinator: Nina Ajmone Marsan, MD, PhD
• Email: N.ajmone@lumc.nl
• Phone: +31715262020

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Liver and Coagulation Markers in ATTR Cardiac Amyloidosis

  This study tests liver function and blood-clotting markers in people with ATTR-CA to see if they reflect disease severity and progression.

  Recruiting University of Messina · Messina, Sicily · NCT07766135

• Cardiac Amyloidosis: See if Intracardiac Thrombi are Common on CT

  This study tests whether a contrast-enhanced cardiac CT can reliably detect intracardiac thrombi in adults with cardiac amyloidosis.

  Recruiting Centre Hospitalier Universitaire Dijon · Dijon · NCT07648303

• Higher pacemaker rate for people with cardiac amyloidosis

  This study will see if temporarily increasing the pacemaker rate improves heart-failure symptoms and exercise tolerance in adults with cardiac amyloidosis who already have pacemakers.

  Recruiting University of Minnesota · Minneapolis, Minnesota · NCT07583823

• Using [64Cu]FBP8 PET/MR to find intracardiac blood clots in cardiac amyloidosis

  We'll test whether a [64Cu]FBP8 PET/MR scan can find blood clots inside the heart of people with cardiac amyloidosis who have atrial fibrillation or atrial flutter.

  Recruiting Phase 3 Brigham and Women's Hospital · Boston, Massachusetts · NCT07560306

• Chest pain screening for hidden cardiac amyloidosis

  We will test whether men over 65 who have chest pain but no coronary artery disease might have hidden cardiac amyloidosis using blood and urine tests, ECG and echocardiography, bone scintigraphy, and sometimes a heart biopsy.

  Recruiting Copenhagen University Hospital, Rigshospitalet · Copenhagen · NCT07435168

• Using advanced heart MRI to improve diagnosis and risk prediction for rare cardiomyopathies

  This project tests whether advanced cardiac MRI techniques can help diagnose and predict future risk for people with rare heart muscle diseases like Danon, Fabry, cardiac amyloidosis, Noonan syndrome, and cardiac sarcoidosis.

  Recruiting Chinese Academy of Medical Sciences, Fuwai Hospital · Beijing · NCT07336394

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.