New patient registry aims to unlock secrets of rare liver disease

NCT ID NCT04883905

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

First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 2 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 real-world settings, and the safety and effectiveness of approved treatments like givosiran. The goal is to better understand AHP and improve patient care.

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Conditions

The condition(s) this trial relates to.

hepatic porphyria hereditary coproporphyria

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

ACUTE HEPATIC PORPHYRIA

Contacts and locations

Locations

Clinical Trial Site
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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
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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
Clinical Trial Site
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London, United Kingdom

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