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SEATTRAC Family Registry for Hereditary Amyloidosis

This study, called the SEATTRAC Family Registry, is collecting health information from people who carry the gene for hereditary amyloidosis (a condition where abnormal proteins build up in organs) or who have already been diagnosed with it. The goal is to understand what predicts when amyloidosis will develop and how it affects people over time, including the risk of death or needing a heart transplant. You can join if you are over 18, have a confirmed genetic mutation for hereditary amyloidosis, and are willing to attend follow-up visits. The study aims to enroll 1000 participants. The current recruitment status is unclear.

Study design
This is an observational study that plans to enroll up to 1000 participants who either carry the gene for hereditary amyloidosis or have the disease.
What's involved
You would be expected to return for required follow-up visits. The specific number or frequency of these visits is not detailed.
Compensation
Not stated in the trial record.
Follow-up
The study will track participants for up to 15 years to observe the development of amyloidosis, and for 10 years to look at mortality or the need for a heart transplant.

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NCT05974644

Southeastern ATTR Amyloidosis Consortium: SEATTRAC Family Registry

Not Yet Recruiting
Not specifiedAges 18+Observational
Virginia Commonwealth University
~1,000 participants
Updated 2026-08-12 on ClinicalTrials.gov
What's tested:Registry

At a glance

Recruiting sites
0 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
The predictors and incidence of amyloidosis
Measured over 15 years
+1 more outcome measured

Conditions

Amyloidosis, Hereditary

Explore related trials

Hereditary AmyloidosisTTR Gene

Where it's being run

1 sites across 1 states
Virginia1

Study leadership

  • Keyur Shah, MD · PRINCIPAL_INVESTIGATOR · Virginia Commonwealth University

Who to contact

Keyur Shah, MD
[email protected]
804-828-4571
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

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

Patient having undergone heart transplantation or implantation of mechanical circulatory support
Patients unable to provide informed consent
Patients having undergone liver transplantation
Patients have evidence of light chain amyloidosis

What this trial measures

  • The predictors and incidence of amyloidosis15 years

    For those enrolled as asymptomatic carriers, it will be assessed if they develop cardiac or extra cardiac amyloidosis

  • Mortality and/or need for heart transplant10 years

    For those with cardiac hereditary transthyretin amyloidosis (hATTR), it will be assessed how many participants die due to disease or require a heart transplant