ELEVATE, a Registry of Patients With Acute Hepatic Porphyria (AHP)
Launched by ALNYLAM PHARMACEUTICALS · May 7, 2021
Trial Information
Current as of August 21, 2025
Recruiting
Keywords
ClinConnect Summary
The ELEVATE trial is a global registry aimed at understanding the experiences of patients with Acute Hepatic Porphyria (AHP), a rare genetic condition that affects the liver. This study will gather information about how AHP progresses over time and how patients are treated in real-world settings. It will also look at the safety and effectiveness of treatments like givosiran and other approved therapies for AHP.
To be eligible for this study, participants must have a confirmed diagnosis of AHP made by their doctor and should not be currently enrolled in any other clinical trials. This trial welcomes all individuals aged 4 to 82 who meet these criteria. Those who join the study can expect to provide information about their health and treatment experiences, which will help improve understanding and management of AHP for everyone.
Gender
ALL
Eligibility criteria
- Inclusion Criteria:
- • Documented diagnosis of AHP, per physician's determination
- Exclusion Criteria:
- • Currently enrolled in a clinical trial for any investigational agent
About Alnylam Pharmaceuticals
Alnylam Pharmaceuticals is a pioneering biopharmaceutical company focused on the development of innovative therapies based on RNA interference (RNAi) technology. Founded in 2002, Alnylam is dedicated to transforming the treatment landscape for patients with genetically defined diseases by leveraging its proprietary platform to discover and develop novel therapeutics. With a robust pipeline of clinical programs targeting a range of conditions, including rare genetic disorders and prevalent diseases, Alnylam is committed to advancing scientific research and improving patient outcomes through cutting-edge medicine and rigorous clinical trials. The company emphasizes collaboration and transparency in its operations, fostering partnerships within the scientific community to drive innovation and enhance healthcare solutions globally.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Seattle, Washington, United States
New York, New York, United States
Winston Salem, North Carolina, United States
Philadelphia, Pennsylvania, United States
Galveston, Texas, United States
Salt Lake City, Utah, United States
Leuven, , Belgium
Paris, , France
Chemnitz, , Germany
Modena, , Italy
London, , United Kingdom
Bordeaux, , France
Cardiff, , United Kingdom
Stockholm, , Sweden
Taipei, , Taiwan
Münster, , Germany
Taichung, , Taiwan
Boston, Massachusetts, United States
Toulouse, , France
Zürich, , Switzerland
Baltimore, Maryland, United States
Milan, , Italy
Würzburg, , Germany
Birmingham, Alabama, United States
Gilbert, Arizona, United States
San Francisco, California, United States
Minneapolis, Minnesota, United States
Oklahoma City, Oklahoma, United States
Patients applied
Trial Officials
Medical Director
Study Director
Alnylam Pharmaceuticals
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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