Cardiac Amyloidosis Registry Study

Status unconfirmed

Conditions studied: Amyloidosis, Immunoglobulin Light-chain

In brief

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.

Key facts

Study ID

NCT05174338

Run by

Cedars-Sinai Medical Center

People needed

5000

Starts

2020-01-08

Expected to finish

2025-12-01

Last updated by the study team

2023-09-06

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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 may not qualify 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.

Where it is running

• University of Arizona Sarver Heart Center — Tucson, Arizona, United States
• UC San Diego Health, Sulpizio Cardiovascular Center — La Jolla, California, United States
• Scripps Health — La Jolla, California, United States
• University of California Davis — Sacramento, California, United States
• University of California, San Francisco — San Francisco, California, United States
• MedStar Health and Vascular Institute/Georgetown University School of Medicine — Washington D.C., District of Columbia, United States
• Johns Hopkins University School of Medicine — Baltimore, Maryland, United States
• Tufts Medical Center — Boston, Massachusetts, United States
• Massachusetts General Hospital — Boston, Massachusetts, United States
• Boston Medical Center — Boston, Massachusetts, United States
• Saint Luke's Hospital of Kansas City — Kansas City, Missouri, United States
• Washington University in St. Louis — St Louis, Missouri, United States
• NYU Langone Health — New York, New York, United States
• Weill Cornell Medicine — New York, New York, United States
• The Mount Sinai Hospital — New York, New York, United States
• Columbia University Irving Medical Center, Clinical Cardiovascular Research Laboratory for the Elderly (CUMC/CCRLE) — New York, New York, United States
• Duke Health — Durham, North Carolina, United States
• Penn Presbyterian Medical Center — Philadelphia, Pennsylvania, United States
• Medical University of South Carolina — Charleston, South Carolina, United States
• University of Texas Southwestern Medical Center — Dallas, Texas, United States
• University of Texas Health Science Center at Houston — Houston, Texas, United States
• University of Utah — Salt Lake City, Utah, United States
• University of Calgary — Calgary, Alberta, Canada

Full record on ClinicalTrials.gov

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