AHP Interview Study
An interview study is underway to understand patient experiences with acute hepatic porphyria.
We are looking for individuals ages 15 and over in the United States or Canada who have acute hepatic porphyria (AHP).
GATEWAY Phase 2 Study: Short-Term Clinical Trial Opportunity for Adults with EPP
The GATEWAY Phase 2 Study is enrolling adults with Erythropoietic Protoporphyria (EPP) to test a potential new treatment.
APOLLO Study for EPP & XLP – Now Recruiting!
A clinical trial evaluating Bitopertin, an investigational oral medication for individuals with Erythropoietic Protoporphyria (EPP) or X-Linked Protoporphyria (XLP). The study aims to assess whether Bitopertin can reduce protoporphyrin IX levels and potentially lessen symptoms from sun exposure.
ELEVATE, a Registry of Patients With AHP
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.
EPP/XLP Parents Questionnaire
Help develop a handbook for EPP parents by sharing your experiences in this brief survey.
EPP/XLP Questionnaire
The goal of this questionnaire is to better understand how EPP/XLP impacts the lives of individuals with this condition.
EPP/XLP Access to Care Interviews
The goal of this research is to better understand the drivers and barriers to accessing care and treatment in EPP/XLP.
Mental Health Focus Group- Acute Porphyrias
This focus group with focus on mental health and mental health resources for the acute hepatic porphyrias.
Mental Health Focus Group- Cutaneous Porphryias
This focus group with focus on mental health and mental health resources for cutaneous porphyrias.
Cimetidine Research Study in Patients with EPP and XLP
An FDA-sponsored study to assess whether cimetidine a medication normally used to treat gastrointestinal issues such as ulcers or acid reflux) reduces protoporphyrin IX (PPIX) levels which may impact photosensitivity.
Phase 3 INSPIRE Study for EPP & XLP – Filled!
MT-7117 is a potential treatment for EPP and XLP. Recruiting patients ages 12+. International and US sites.
Longitudinal Study of the Porphyrias
Long-term study to learn more about the disease course and quality of life for all the porphyrias. Open to US residents with a confirmed diagnosis of porphyria.
Online AHP Drug Database
This study collects information on acute attacks that may have been caused by a medication.
EPP/XLP Gene Modifier Study
Study to better understand why some patients with EPP and XLP experience more severe symptoms than others.