Transthyretin Amyloid Cardiomyopathy Clinical Trial
Cardiac Amyloidosis Registry Study
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.
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 5000 patients.
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.
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.
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There are 23 Locations for this study
Tucson Arizona, 85724, United States
La Jolla California, 92037, United States
La Jolla California, 92137, United States
Sacramento California, 95817, United States
San Francisco California, 94103, United States
Washington District of Columbia, 20010, United States
Baltimore Maryland, 21287, United States
Boston Massachusetts, 02111, United States
Boston Massachusetts, 02114, United States
Boston Massachusetts, 02118, United States
Kansas City Missouri, 64111, United States
Saint Louis Missouri, 63110, United States
New York New York, 10016, United States
New York New York, 10021, United States
New York New York, 10029, United States
New York New York, 10032, United States
Durham North Carolina, 27710, United States
Philadelphia Pennsylvania, 19104, United States
Charleston South Carolina, 29425, United States
Dallas Texas, 75390, United States
Houston Texas, 77030, United States
Salt Lake City Utah, 84112, United States
Calgary Alberta, T2N 4, Canada
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