Research Study for Patients with Cardiac Amyloids

Study Summary

The University of Chicago and Dr. Fedson are conducting a research study to collect information on subjects who have been diagnosed with transthyretin-associated amyloidosis (TTR-associated amyloidosis) or subjects who are at risk of developing TTR-associated amyloidosis. TTR-associated amyloidosis is a disease caused by the abnormal build up of protein in body tissues. These protein build ups are called "amyloids". The presence of these build ups interferes with the normal functions of the organs, and as the build ups enlarge, more tissue damage occurs and the disease (TTR-associated amyloidosis) worsens.

Because TTR-associated amyloidosis is very rare, there are many unanswered questions about this disease. In order to understand the disease better and improve the care of subjects, this research study was created.

This research study does not involve your taking a drug or receiving any other treatment. Instead, the study is designed to gather medical information on as many eligible subjects as possible who have TTR-associated amyloidosis. Participation in the study involves collecting information from when you go to the University of Chicago Medical Center to have tests or procedures performed as part of your routine medical care. Once you are enrolled into the study, your study doctor will enter data about you and your condition into the study database. All the data will be taken from your medical records. The study will be open for at least ten years. All subjects who take part in this survey may be followed for up to 10 years.

Benefits

There are no expected benefits to you by participating in this study. However, this is the first study to collect information about transthyretin-associated amyloidosis in a large group of subjects. The information gathered could lead to better monitoring and treatment choices for you and other subjects diagnosed with this condition in the future.

Participation Details

Initial selection criteria include:

• Must have been diagnosed with TTR-associated amyloidosis or are at risk of developing TTR-associated amyloidosis
• Must be at least 18 years of age
• Must meet study medical criteria as evaluated by Dr. Fedson

Study Director: Dr. Savitri Fedson
Department: Medicine-Cardiology

For more information contact:
lbond@medicine.bsd.uchicago.edu
(773) 702-6385

IRB: #16940B