Are you looking to participate in much-needed research in the porphyrias?

There are multiple studies that currently need participants, and more on the way.

Contact UPA at info@porphyria.org for more information or to make sure we contact you for future research. Together, we can make a difference.

Some studies seek to better understand the burden and impact of living with porphyria while others study a potential treatment. They all need patient involvement – let’s unite to make a difference in your disease!

Expert physicians of the Porphyrias Consortium are seeking patients for multiple studies, including:

ALL PORPHYRIAS:

Longitudinal Study – this is a long-term observational study that evaluates diagnosed patients to better understand the impact of porphyria.

PROTOPORPHYRIAS: 

EPP and XLP:

Cimetidine- Now enrolling! The objective of this study is to determine the efficacy and safety of oral cimetidine administration for treatment of the protoporphyrias.

EPP:

Disc Medicine/Bitopertin – Study sites not yet active! This is a phase 2 clinical trial of bitopertin to evaluate the safety, tolerability, efficacy, and protoporphyrin IX concentrations in participants with EPP.

AHP (all types):

Assessment of Medication Sensitivity in Acute Hepatic Porphyria (AHP) – This study is designed to better understand acute porphyria attacks that may have been caused by a medication.