Understanding sun sensitivity in rare porphyria disorders
Part of Digestive system, Genetic & congenital, Hormones & metabolism, Skin clinical trials.
This study tracks how your body reacts to sunlight if you have erythropoietic protoporphyria (EPP) or X-linked protoporphyria (XLP)—rare genetic conditions that cause painful skin reactions to sun exposure. Researchers will use special devices and daily logs to better understand your symptoms and how light affects your skin.
Summary written for real people, not researchers, by Clin2.
Who can take part
- Age 12 or older
- Confirmed diagnosis of EPP or XLP through genetic testing or blood tests showing elevated porphyrin levels
- Currently experiencing symptoms of EPP or XLP
- History of warning signs (tingling, burning) within 45 minutes of sun exposure before skin damage occurs
- Willing to wear a light-measuring device and keep skin covered during the study period
- Able to complete a daily symptom diary and attend study visits
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
Similar studies
Other trials that look related to this one.
This study tests an oral medication, PORT-77, to reduce pain and sensitivity to sunlight in people with EPP or XLP. It may help those who experience symptoms shortly after sun exposure.
This program provides access to an experimental drug called bitopertin, which may help reduce the severe light sensitivity and pain caused by EPP or XLP. It's for people aged 12 and older who have not had success with other treatments.
This study follows people with porphyria over time to learn more about the disease, its symptoms, and how it affects daily life. By tracking patients, researchers hope to improve care and understanding of this rare group of conditions.
This trial tests an oral medication called ciclopirox (ATL-001) to see if it can reduce skin sensitivity to sunlight in adults with CEP. It aims to improve the skin lesions caused by this rare disease.
This study builds a large international registry of people with rare, severe pustular psoriasis to help doctors understand the genetics of the condition. You may be asked for information and, if you have eligible family members, DNA testing to learn how the disease runs in families.
This study aims to find genes that may affect acute intermittent porphyria (AIP), a rare genetic condition that can cause sudden, severe attacks. By studying blood, saliva, and urine from family members, researchers hope to better understand and possibly improve treatment for this condition.
Hear when a new Erythropoietic Protoporphyria (EPP) trial opens
We’ll email you when one opens — at most once a week, no account needed, unsubscribe anytime.