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ELEVATE, a Registry of Patients With Acute Hepatic Porphyria (AHP)

NCT ID: NCT04883905

Last Updated: 2025-11-13

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

150 participants

Study Classification

OBSERVATIONAL

Study Start Date

2021-04-26

Study Completion Date

2027-04-01

Brief Summary

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This global patient registry is being conducted to characterize the natural history and real-world clinical management of patients with AHP, and to further characterize the real-world safety and effectiveness of givosiran and other approved AHP therapies.

Detailed Description

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Conditions

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Acute Hepatic Porphyria

Keywords

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Givosiran AHP Acute hepatic porphyria

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Patients with AHP

Patients with a diagnosis of AHP will be eligible for the study and will be managed and treated per routine clinical practice.

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Documented diagnosis of AHP, per physician's determination

Exclusion Criteria

* Currently enrolled in a clinical trial for any investigational agent
Minimum Eligible Age

12 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Alnylam Pharmaceuticals

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Medical Director

Role: STUDY_DIRECTOR

Alnylam Pharmaceuticals

Locations

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Clinical Trial Site

Birmingham, Alabama, United States

Site Status RECRUITING

Clinical Trial Site

Gilbert, Arizona, United States

Site Status RECRUITING

Clinical Trial Site

San Francisco, California, United States

Site Status RECRUITING

Clinical Trial Site

Baltimore, Maryland, United States

Site Status RECRUITING

Clinical Trial Site

Boston, Massachusetts, United States

Site Status RECRUITING

Clinical Trial Site

Minneapolis, Minnesota, United States

Site Status RECRUITING

Clinical Trial Site

New York, New York, United States

Site Status RECRUITING

Clinical Trial Site

Winston-Salem, North Carolina, United States

Site Status RECRUITING

Clinical Trial Site

Oklahoma City, Oklahoma, United States

Site Status RECRUITING

Clinical Trial Site

Philadelphia, Pennsylvania, United States

Site Status COMPLETED

Clinical Trial Site

Galveston, Texas, United States

Site Status RECRUITING

Clinical Trial Site

Salt Lake City, Utah, United States

Site Status RECRUITING

Clinical Trial Site

Seattle, Washington, United States

Site Status RECRUITING

Clinical Trial Site

Leuven, , Belgium

Site Status RECRUITING

Clinical Trial Site

Bordeaux, , France

Site Status RECRUITING

Clinical Trial Site

Paris, , France

Site Status RECRUITING

Clinical Trial Site

Toulouse, , France

Site Status RECRUITING

Clinical Trial Site

Berlin, , Germany

Site Status RECRUITING

Clinical Trial Site

Chemnitz, , Germany

Site Status RECRUITING

Clinical Trial Site

Würzburg, , Germany

Site Status RECRUITING

Clinical Trial Site

Milan, , Italy

Site Status RECRUITING

Clinical Trial Site

Modena, , Italy

Site Status RECRUITING

Clinical Trial Site

Madrid, , Spain

Site Status RECRUITING

Clinical Trial Site

Stockholm, , Sweden

Site Status RECRUITING

Clinical Trial Site

Zurich, , Switzerland

Site Status RECRUITING

Clinical Trial Site

Taichung, , Taiwan

Site Status RECRUITING

Clinical Trial Site

Taipei, , Taiwan

Site Status RECRUITING

Clinical Trial Site

Cardiff, , United Kingdom

Site Status RECRUITING

Clinical Trial Site

London, , United Kingdom

Site Status RECRUITING

Countries

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United States Belgium France Germany Italy Spain Sweden Switzerland Taiwan United Kingdom

Central Contacts

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Alnylam Clinical Trial Information Line

Role: CONTACT

Phone: 1-877-ALNYLAM

Email: [email protected]

Alnylam Clinical Trial Information Line

Role: CONTACT

Phone: 1-877-256-9526

Email: [email protected]

Other Identifiers

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EUPAS43201

Identifier Type: REGISTRY

Identifier Source: secondary_id

ALN-AS1-006

Identifier Type: -

Identifier Source: org_study_id