Registry following people with a hereditary TTR amyloidosis gene change
Follows adults carrying a TTR gene change that can cause amyloidosis, with or without symptoms.
Plain-language title generated from the registry record
Registry title: Southeastern ATTR Amyloidosis Consortium: SEATTRAC Family Registry
Key facts
- Where
- Richmond, United StatesSee the site
Where in United States
- Virginia Commonwealth UniversityRichmond, United StatesNo longer taking part
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Virginia Commonwealth University
- Trial code
- NCT05974644
- Record updated
- 3 November 2026
- Original description
The study design is a prospective registry including asymptomatic and symptomatic patients who carry a pathogenic TTR mutation. The study will enroll patients who meet the inclusion criteria and none of the exclusion criteria until 1000 patients are enrolled, at which point in time the study investigators will evaluate whether further patient accrual is meaningful.Read full original descriptionShow less
Southeastern ATTR Amyloidosis Consortium: SEATTRAC Family Registry
The study design is a prospective registry including asymptomatic and symptomatic patients who carry a pathogenic TTR mutation. The study will enroll patients who meet the inclusion criteria and none of the exclusion criteria until 1000 patients are enrolled, at which point in time the study investigators will evaluate whether further patient accrual is meaningful.
Inclusion: Over the age of 18 years; Carrier of a pathogenic hATTR mutation confirmed on whole blood gene testing or mass spectrometry; Willing to return for required follow-up visits.
Exclusion: Patients having undergone liver transplantation; Patient having undergone heart transplantation or implantation of mechanical circulatory support; Patients unable to provide informed consent; Patients have evidence of light chain amyloidosis.