New global registry aims to shed light on rare liver disease

NCT ID NCT04883905

Recruiting now Knowledge-focused Sponsor: Alnylam Pharmaceuticals Source: ClinicalTrials.gov ↗

First seen Nov 01, 2025 · Last updated May 15, 2026 · Updated 35 times

Summary

This study is a worldwide registry for people with acute hepatic porphyria (AHP), a rare liver condition. Researchers will collect information over time to better understand the disease and how current treatments work in everyday life. The goal is to improve care and knowledge for patients and doctors.

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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

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Study contacts

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Locations

Clinical Trial Site
RECRUITING

Birmingham, Alabama, 35233, United States
Clinical Trial Site
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Gilbert, Arizona, 85234, United States
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San Francisco, California, 90074, United States
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Baltimore, Maryland, 21205, United States
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Boston, Massachusetts, 02114, United States
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Minneapolis, Minnesota, 55455, United States
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New York, New York, 10029, United States
Clinical Trial Site
COMPLETED

Winston-Salem, North Carolina, 27157, United States
Clinical Trial Site
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Oklahoma City, Oklahoma, 73120, United States
Clinical Trial Site
COMPLETED

Philadelphia, Pennsylvania, 19107, United States
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Galveston, Texas, 77555, United States
Clinical Trial Site
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Salt Lake City, Utah, 84112, United States
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Seattle, Washington, 98195, United States
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Brussels, Belgium
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Leuven, Belgium
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Bordeaux, France
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Paris, France
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Toulouse, France
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Berlin, Germany
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Chemnitz, Germany
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Würzburg, Germany
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Milan, Italy
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Modena, Italy
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Madrid, Spain
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Stockholm, Sweden
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Zurich, Switzerland
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Taichung, Taiwan
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Taipei, Taiwan
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Cardiff, United Kingdom
Clinical Trial Site
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London, United Kingdom

Conditions

Explore the condition pages connected to this study.

ACUTE HEPATIC PORPHYRIA