New study aims to unlock mysteries of rare sun allergy diseases

NCT ID NCT07567131

Recruiting now Knowledge-focused Sponsor: Portal Therapeutics, Inc. Source: ClinicalTrials.gov ↗

First seen May 10, 2026 · Last updated May 20, 2026 · Updated 3 times

Summary

This study watches and records how erythropoietic protoporphyria (EPP) and X-linked porphyria (XLP) affect people aged 12 and older. Participants will not receive any treatment but will track their symptoms, sun exposure, and have blood tests over 6 months. The goal is to better understand these rare conditions that cause severe pain from sunlight.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

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Study contacts

Contact

Phone: •••-•••-•••• Email: •••••@•••••

Locations

AP-HP Hopital Bichat - Claude Bernard
NOT_YET_RECRUITING

Paris, France

Contact Phone: •••-•••-•••• Email: •••••@•••••
Azienda Ospedaliero-Universitaria di Modena
NOT_YET_RECRUITING

Modena, Italy

Contact Phone: •••-•••-•••• Email: •••••@•••••
Centre Hospitalier Universitaire de Bordeaux - Hopital Saint - Andre
NOT_YET_RECRUITING

Bordeaux, France

Contact Phone: •••-•••-•••• Email: •••••@•••••
Consorcio Hospital General Universitario de Valencia
NOT_YET_RECRUITING

Valencia, Spain

Contact Phone: •••-•••-•••• Email: •••••@•••••
Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico di Milano
NOT_YET_RECRUITING

Milan, Italy

Contact Phone: •••-•••-•••• Email: •••••@•••••
Gazi University Faculty of Medicine
NOT_YET_RECRUITING

Ankara, Turkey (Türkiye)

Contact Phone: •••-•••-•••• Email: •••••@•••••
Guy's Hospital
RECRUITING

London, United Kingdom

Contact Phone: •••-•••-•••• Email: •••••@•••••
Haukeland University Hospital
NOT_YET_RECRUITING

Bergen, Norway

Contact Phone: •••-•••-•••• Email: •••••@•••••
Hospital Universitario 12 de Octubre
RECRUITING

Madrid, Spain

Contact Phone: •••-•••-•••• Email: •••••@•••••
Massachusetts General Hospital
RECRUITING

Boston, Massachusetts, 02114, United States

Contact Phone: •••-•••-•••• Email: •••••@•••••
Mount Sinai School of Medicine
RECRUITING

New York, New York, 10029, United States

Contact Phone: •••-•••-•••• Email: •••••@•••••
Ninewells Hospital
RECRUITING

Dundee, United Kingdom

Contact Phone: •••-•••-•••• Email: •••••@•••••
Salford Royal Hospital
RECRUITING

Manchester, United Kingdom

Contact Phone: •••-•••-•••• Email: •••••@•••••
Temple University
NOT_YET_RECRUITING

Philadelphia, Pennsylvania, 19121, United States

Contact Phone: •••-•••-•••• Email: •••••@•••••
UZ Leuven
NOT_YET_RECRUITING

Leuven, Belgium

Contact Phone: •••-•••-•••• Email: •••••@•••••
University Hospital of Wales
RECRUITING

Cardiff, United Kingdom

Contact Phone: •••-•••-•••• Email: •••••@•••••
University of Alberta Hospital
NOT_YET_RECRUITING

Edmonton, Canada

Contact Phone: •••-•••-•••• Email: •••••@•••••
University of Texas Health - Ertan Digestive Disease Center
RECRUITING

Houston, Texas, 77030, United States

Contact Phone: •••-•••-•••• Email: •••••@•••••
Wake Forest University Baptist Health - Dept of Gastroenterology
RECRUITING

Wake Forest, North Carolina, 27587, United States

Contact Phone: •••-•••-•••• Email: •••••@•••••

Conditions

Explore the condition pages connected to this study.

ERYTHROPOIETIC PROTOPORPHYRIA (EPP) X-LINKED PORPHYRIA (XLP)