RECRUITING

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

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Conditions

Acute Hepatic PorphyriaGivosiranAHP

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

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

Quick Facts

Study Start:2021-04-26
Study Completion:2027-04-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04883905

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:12 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Documented diagnosis of AHP, per physician's determination
  1. * Currently enrolled in a clinical trial for any investigational agent

Contacts and Locations

Study Contact

Alnylam Clinical Trial Information Line
CONTACT
1-877-ALNYLAM
clinicaltrials@alnylam.com
Alnylam Clinical Trial Information Line
CONTACT
1-877-256-9526
clinicaltrials@alnylam.com

Principal Investigator

Medical Director
STUDY_DIRECTOR
Alnylam Pharmaceuticals

Study Locations (Sites)

Clinical Trial Site
Birmingham, Alabama, 35233
United States
Clinical Trial Site
Gilbert, Arizona, 85234
United States
Clinical Trial Site
San Francisco, California, 90074
United States
Clinical Trial Site
Baltimore, Maryland, 21205
United States
Clinical Trial Site
Boston, Massachusetts, 02114
United States
Clinical Trial Site
Minneapolis, Minnesota, 55455
United States
Clinical Trial Site
New York, New York, 10029
United States
Clinical Trial Site
Winston-Salem, North Carolina, 27157
United States
Clinical Trial Site
Oklahoma City, Oklahoma, 73120
United States
Clinical Trial Site
Philadelphia, Pennsylvania, 19107
United States
Clinical Trial Site
Galveston, Texas, 77555
United States
Clinical Trial Site
Salt Lake City, Utah, 84112
United States
Clinical Trial Site
Seattle, Washington, 98195
United States

Collaborators and Investigators

Sponsor: Alnylam Pharmaceuticals

  • Medical Director, STUDY_DIRECTOR, Alnylam Pharmaceuticals

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2021-04-26
Study Completion Date2027-04-01

Study Record Updates

Study Start Date2021-04-26
Study Completion Date2027-04-01

Terms related to this study

Keywords Provided by Researchers

  • Givosiran
  • AHP
  • Acute hepatic porphyria

Additional Relevant MeSH Terms

  • Acute Hepatic Porphyria