Summary

Eligibility
for people ages 18-89 (full criteria)
Location
at La Jolla, California and other locations
Dates
study started
estimated completion

Description

Summary

This registry is a observational, multi-center study designed to collect data and analyze it retrospectively on patients with cardiac amyloidosis who have been evaluated and treated at major amyloid centers across the US and internationally between 1997 and 2025.

Official Title

Cardiac Amyloidosis Registry Study - A Multi-Center, Longitudinal, Observational Survey of Patients With Cardiac Amyloidosis

Details

Amyloidosis is a rare, multisystem disorder in which an insoluble protein is deposited in tissues, leading to organ dysfunction. Several proteins have been identified to potentially lead to amyloid cardiomyopathy (AC). Given the rare nature of these diseases, a large, multi-center effort to describe the characteristics of these patients and their outcomes with novel treatment modalities has not been established. (TBD) academic medical centers from the US and internationally will compile demographic, hemodynamic and organ-involvement data, as well as treatment strategies for AL and TTR amyloidosis. This registry is an observational, multi-center study designed to collect data and analyze it retrospectively on patients with cardiac amyloidosis who have been evaluated and treated at major amyloid centers across the US and internationally between 1997 and 2025. It is expected that the total patient population will be approximately 2000 patients.

Keywords

Amyloidosis, Immunoglobulin Light-chain, Immunoglobulin Light-chain Amyloidosis, Amyloidosis, AL and TTR amyloidosis

Eligibility

You can join if…

Open to people ages 18-89

  • Established diagnosis of AL or TTR cardiomyopathy identified or treated within the timeframe
  • Specific to CSMC: If the individual provided consent while they were alive, and if sufficient information exists in their chart, their data will be included.
  • Information on deceased individuals may be included, but only with the appropriate approval from the external site IRB and/or according to the federal regulations for the protection of human subjects.

You CAN'T join if...

  • At Cedars-Sinai, records that specifically state not to be used in research will not be accessed. Patients who have enacted a No Research Flag or are noted as "Break the Glass" will not be included. For external sites, records that indicate No Research Flag or are noted as "Break the Glass" may be included based on institutional policies and appropriate approvals, as applicable.

Locations

  • UC San Diego Health, Sulpizio Cardiovascular Center
    La Jolla California 92037 United States
  • Scripps Health
    La Jolla California 92137 United States

Details

Status
accepting new patients by invitation only
Start Date
Completion Date
(estimated)
Sponsor
Cedars-Sinai Medical Center
ID
NCT05174338
Study Type
Observational
Participants
Expecting 2000 study participants
Last Updated