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.
This is an AI summary of the original study and may miss details. Read our disclaimer.
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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
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Study contacts
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Contact
Email: •••••@•••••
Locations
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AP-HP Hopital Bichat - Claude Bernard
NOT_YET_RECRUITINGParis, France
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Azienda Ospedaliero-Universitaria di Modena
NOT_YET_RECRUITINGModena, Italy
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Centre Hospitalier Universitaire de Bordeaux - Hopital Saint - Andre
NOT_YET_RECRUITINGBordeaux, France
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Consorcio Hospital General Universitario de Valencia
NOT_YET_RECRUITINGValencia, Spain
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Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico di Milano
NOT_YET_RECRUITINGMilan, Italy
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Gazi University Faculty of Medicine
NOT_YET_RECRUITINGAnkara, Turkey (Türkiye)
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Guy's Hospital
RECRUITINGLondon, United Kingdom
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Haukeland University Hospital
NOT_YET_RECRUITINGBergen, Norway
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Hospital Universitario 12 de Octubre
RECRUITINGMadrid, Spain
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Massachusetts General Hospital
RECRUITINGBoston, Massachusetts, 02114, United States
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Mount Sinai School of Medicine
RECRUITINGNew York, New York, 10029, United States
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Ninewells Hospital
RECRUITINGDundee, United Kingdom
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Salford Royal Hospital
RECRUITINGManchester, United Kingdom
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Temple University
NOT_YET_RECRUITINGPhiladelphia, Pennsylvania, 19121, United States
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UZ Leuven
NOT_YET_RECRUITINGLeuven, Belgium
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University Hospital of Wales
RECRUITINGCardiff, United Kingdom
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University of Alberta Hospital
NOT_YET_RECRUITINGEdmonton, Canada
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University of Texas Health - Ertan Digestive Disease Center
RECRUITINGHouston, Texas, 77030, United States
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Wake Forest University Baptist Health - Dept of Gastroenterology
RECRUITINGWake Forest, North Carolina, 27587, United States
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- Can a daily pill douse the Sun's pain for people with EPP?
- New hope for rare sun allergy: bitopertin offered to patients with no options
- New drug aims to let sunlight-sensitive patients enjoy the sun longer
- New pill could let EPP patients enjoy the sun without pain
- New pill could let Sun-Sensitive patients enjoy the outdoors