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Registry for patients with Acute Hepatic Porphyria

ELEVATE, a Global Observational Longitudinal Prospective Registry of Patients With Acute Hepatic Porphyria (AHP)

Observational Alnylam Pharmaceuticals · NCT04883905

This study is creating a registry to track the experiences and treatment results of people with Acute Hepatic Porphyria to see how well givosiran and other approved therapies work in real life.

Quick facts

Study typeObservational
Enrollment150 (estimated)
Ages12 Years and up
SexAll
SponsorAlnylam Pharmaceuticals Industry-sponsored
Locations30 sites (Birmingham, Alabama and 29 other locations)
Trial IDNCT04883905 on ClinicalTrials.gov

What this trial studies

This global patient registry aims to characterize the natural history and real-world clinical management of patients diagnosed with Acute Hepatic Porphyria (AHP). It will also evaluate the real-world safety and effectiveness of givosiran and other approved therapies for AHP. By collecting data from various clinical sites, the registry seeks to provide insights into patient experiences and treatment outcomes over time.

Who should consider this trial

Good fit: Ideal candidates for this registry are individuals with a documented diagnosis of Acute Hepatic Porphyria.

Not a fit: Patients currently enrolled in a clinical trial for any investigational agent may not benefit from this registry.

Why it matters

Potential benefit: If successful, this registry could enhance understanding of AHP and improve treatment strategies for patients.

How similar studies have performed: Other studies have shown success in utilizing patient registries to gather valuable data on rare diseases, making this approach promising.

Eligibility criteria

Show full inclusion / exclusion criteria 
Inclusion Criteria:

* Documented diagnosis of AHP, per physician's determination

Exclusion Criteria:

* Currently enrolled in a clinical trial for any investigational agent

Where this trial is running

Birmingham, Alabama and 29 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
View on ClinicalTrials.gov → Find more trials like this →
Conditions Acute Hepatic PorphyriaGivosiranAHPAcute hepatic porphyria
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.