International Cardiac Amyloidosis Registry
Launched by LEIDEN UNIVERSITY MEDICAL CENTER · Mar 18, 2025
Trial Information
Current as of July 24, 2025
Recruiting
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
About Leiden University Medical Center
Leiden University Medical Center (LUMC) is a prominent academic medical center located in the Netherlands, renowned for its commitment to advancing healthcare through innovative research and high-quality patient care. As a clinical trial sponsor, LUMC focuses on translating scientific discoveries into effective therapies, fostering collaborations between researchers, clinicians, and industry partners. The center is dedicated to conducting rigorous clinical studies across various medical fields, ensuring adherence to ethical standards and regulatory requirements while prioritizing patient safety and outcomes. Through its multidisciplinary approach, LUMC aims to contribute significantly to the understanding and treatment of complex health conditions, driving progress in personalized medicine and improving global health.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Edegem, , Belgium
Leiden, , Netherlands
Brugge, , Belgium
Sagamihara, , Japan
Roma, , Italy
Lisbon, , Portugal
Patients applied
Trial Officials
Nina Ajmone Marsan, MD, PhD
Principal Investigator
Leiden University Medical Center
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported