Cardiac Amyloidosis Registry Study

Launched by CEDARS-SINAI MEDICAL CENTER · Dec 13, 2021

Keywords

ClinConnect Summary

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 amylo...

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 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.
• Exclusion Criteria:
• • 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.