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New patient registry aims to unlock secrets of rare liver disease

NCT ID NCT04883905

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

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 24, 2026 · Last updated Sep 09, 2026 · Updated 4 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.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 150 people

The number the study aims to enrol. It can still change while the study runs.

Started

Apr 2021

Expected to finish

Dec 2030

An estimate. End dates often move.

Lead sponsor

A company

The lead sponsor is a pharmaceutical, biotech, or medical-device company.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients with all types of AHP, including patients with hepatic and/or renal impairment, adolescents, elderly patient, and pregnant or lactating women.

Ages

12 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Documented diagnosis of AHP, per physician's determination Exclusion Criteria: * Currently enrolled in a clinical trial for any investigational agent

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Get notified about this study

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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

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    28 sites in 10 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Clinical Trial Site

    RECRUITING

    Birmingham, Alabama, 35233, United States

  • Clinical Trial Site

    RECRUITING

    Gilbert, Arizona, 85234, United States

  • Clinical Trial Site

    RECRUITING

    San Francisco, California, 90074, United States

  • Clinical Trial Site

    RECRUITING

    Baltimore, Maryland, 21205, United States

  • Clinical Trial Site

    RECRUITING

    Boston, Massachusetts, 02114, United States

  • Clinical Trial Site

    RECRUITING

    Minneapolis, Minnesota, 55455, United States

  • Clinical Trial Site

    RECRUITING

    New York, New York, 10029, United States

  • Clinical Trial Site

    COMPLETED

    Winston-Salem, North Carolina, 27157, United States

  • Clinical Trial Site

    RECRUITING

    Oklahoma City, Oklahoma, 73120, United States

  • Clinical Trial Site

    COMPLETED

    Philadelphia, Pennsylvania, 19107, United States

  • Clinical Trial Site

    RECRUITING

    Galveston, Texas, 77555, United States

  • Clinical Trial Site

    RECRUITING

    Salt Lake City, Utah, 84112, United States

  • Clinical Trial Site

    RECRUITING

    Seattle, Washington, 98195, United States

  • Clinical Trial Site

    RECRUITING

    Brussels, Belgium

  • Clinical Trial Site

    RECRUITING

    Leuven, Belgium

  • Clinical Trial Site

    RECRUITING

    Bordeaux, France

  • Clinical Trial Site

    RECRUITING

    Paris, France

  • Clinical Trial Site

    RECRUITING

    Toulouse, France

  • Clinical Trial Site

    RECRUITING

    Berlin, Germany

  • Clinical Trial Site

    RECRUITING

    Chemnitz, Germany

  • Clinical Trial Site

    RECRUITING

    Würzburg, Germany

  • Clinical Trial Site

    RECRUITING

    Milan, Italy

  • Clinical Trial Site

    RECRUITING

    Modena, Italy

  • Clinical Trial Site

    RECRUITING

    Madrid, Spain

  • Clinical Trial Site

    RECRUITING

    Stockholm, Sweden

  • Clinical Trial Site

    RECRUITING

    Zurich, Switzerland

  • Clinical Trial Site

    RECRUITING

    Taichung, Taiwan

  • Clinical Trial Site

    RECRUITING

    Taipei, Taiwan

  • Clinical Trial Site

    RECRUITING

    Cardiff, United Kingdom

  • Clinical Trial Site

    RECRUITING

    London, United Kingdom

More trials for these conditions

Other studies related to the condition(s) this trial covers.