New registry aims to unlock secrets of rare liver disease

NCT ID NCT04883905

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

First seen Nov 01, 2025 · Last updated May 21, 2026 · Updated 36 times

Summary

This study is a global registry that will follow about 150 people with acute hepatic porphyria (AHP) over time. Researchers will collect information on how the disease progresses, how it is managed in everyday medical practice, and the safety and effectiveness of approved treatments like givosiran. The goal is to better understand AHP and improve care for patients.

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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
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Birmingham, Alabama, 35233, United States
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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
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Winston-Salem, North Carolina, 27157, United States
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Oklahoma City, Oklahoma, 73120, United States
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Philadelphia, Pennsylvania, 19107, United States
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Galveston, Texas, 77555, United States
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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
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London, United Kingdom

Conditions

Explore the condition pages connected to this study.

ACUTE HEPATIC PORPHYRIA