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New registry aims to unlock secrets of rare genetic heart disease

NCT ID NCT05974644

First seen Nov 01, 2025 · Last updated May 20, 2026 · Updated 23 times

Summary

This study will enroll up to 1,000 people aged 18 and older who carry a specific genetic mutation linked to hereditary transthyretin (hATTR) amyloidosis. Participants may be symptom-free or already have symptoms. The goal is to track who develops amyloidosis and, for those with heart involvement, how many die or need a heart transplant. No treatment is given; this is an observational registry to better understand the disease.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Virginia Commonwealth University

    Richmond, Virginia, 23298, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

Conditions

Explore the condition pages connected to this study.