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.

Currently there are no clinical trials recruiting. Join our mailing list to learn about upcoming opportunities.

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.

Featured

EPP, XLP

stEPP Study for EPP & XLP

EPP, XLP

Sponsored by Portal Therapeutics. This study tracks the disease and its impact on individuals living with Erythropoietic Protoporphyria (EPP) or X-Linked Protoporphyria (XLP).

EPP, XLP

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

Support research as a control participant

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

You do not need to have porphyria to participate in porphyria research. Learn how you can get involved!

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

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

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.