Participate in Research

The UPA supports research which is focused on improving diagnosis, developing therapies, understanding of the disease burden, and advocates for increased research funding that can benefit patients — with an ultimate goal of helping researchers find a cure for all porphyrias.

Currently Recruiting- Clinical Trials

Clinical trials are studies testing new or experimental potential treatments for the porphyrias. These studies are important because they playing a key role in the development and FDA (Food and Drug Administration) approval of new therapies. Other studies may be available at clinicaltrials.gov.

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EPP, XLP

APOLLO Study for EPP & XLP – Now Recruiting!

EPP, XLP

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.

EPP, XLP

Currently Recruiting- Observational Studies

Observational studies look to understand more about the complications and issues people with the porphyrias experience. These studies are important because they contribute to the overall knowledge and progress of the understanding of the porphyrias.

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AIP, HCP, VP, ADP

ELEVATE, a Registry of Patients With AHP

AIP, HCP, VP, ADP

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.

AIP, HCP, VP, ADP

EPP, XLP

EPP/XLP Parents Questionnaire

EPP, XLP

Help develop a handbook for EPP parents by sharing your experiences in this brief survey.

EPP, XLP

AIP, HCP, VP, ADP, EPP, XLP, HEP, PCT, CEP

Longitudinal Study of the Porphyrias

AIP, HCP, VP, ADP, EPP, XLP, HEP, PCT, CEP

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.