New study aims to unlock mysteries of rare sun allergy disorders
NCT ID NCT07567131
First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time
Summary
This observational study is gathering information on how erythropoietic protoporphyria (EPP) and X-linked porphyria (XLP) affect people aged 12 and older. Over 6 months, researchers will track symptoms, light exposure, and blood levels of protoporphyrin IX (PPIX) in 50 participants. No treatment is given; the goal is to better understand these rare conditions that cause severe pain and skin reactions to sunlight.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
What this could lead to
If successful, this study could provide better understanding of EPP and XLP, potentially guiding future treatments or management strategies.
What could go wrong
This is an observational study with no treatment given, so it won't directly improve symptoms. Results may not lead to immediate changes in care.
Disclaimer
Read more
Show less
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.
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.
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for ERYTHROPOIETIC PROTOPORPHYRIA (EPP) are added.
By submitting, you agree to our Terms of use
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Show contact details
Enter your email to view the contact information for this study.
By submitting, you agree to our Terms of use
Study contacts
-
Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
-
AP-HP Hopital Bichat - Claude Bernard
NOT_YET_RECRUITINGParis, France
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Azienda Ospedaliero-Universitaria di Modena
NOT_YET_RECRUITINGModena, Italy
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Centre Hospitalier Universitaire de Bordeaux - Hopital Saint - Andre
NOT_YET_RECRUITINGBordeaux, France
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Consorcio Hospital General Universitario de Valencia
NOT_YET_RECRUITINGValencia, Spain
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico di Milano
NOT_YET_RECRUITINGMilan, Italy
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Gazi University Faculty of Medicine
NOT_YET_RECRUITINGAnkara, Turkey (Türkiye)
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Guy's Hospital
RECRUITINGLondon, United Kingdom
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Haukeland University Hospital
NOT_YET_RECRUITINGBergen, Norway
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Hospital Universitario 12 de Octubre
RECRUITINGMadrid, Spain
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Massachusetts General Hospital
RECRUITINGBoston, Massachusetts, 02114, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Mount Sinai School of Medicine
RECRUITINGNew York, New York, 10029, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Ninewells Hospital
RECRUITINGDundee, United Kingdom
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Salford Royal Hospital
RECRUITINGManchester, United Kingdom
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Temple University
NOT_YET_RECRUITINGPhiladelphia, Pennsylvania, 19121, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
UZ Leuven
NOT_YET_RECRUITINGLeuven, Belgium
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
University Hospital of Wales
RECRUITINGCardiff, United Kingdom
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
University of Alberta Hospital
NOT_YET_RECRUITINGEdmonton, Canada
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
University of Texas Health - Ertan Digestive Disease Center
RECRUITINGHouston, Texas, 77030, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Wake Forest University Baptist Health - Dept of Gastroenterology
RECRUITINGWake Forest, North Carolina, 27587, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••