Tracking rare disease: global effort to understand porphyria patterns

NCT ID NCT04883905

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

Summary

This study is creating a global registry to track 150 patients with acute hepatic porphyria (AHP), a rare genetic disorder. Researchers will follow patients over time to understand how the disease naturally progresses and how treatments work in real-world settings. The goal is to gather information about disease patterns, treatment effectiveness, and quality of life without testing new therapies.

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

Contact

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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
Clinical Trial Site
COMPLETED

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

Conditions

Explore the condition pages connected to this study.

ACUTE HEPATIC PORPHYRIA