Light Exposure Patterns and Symptoms Among Patients With Erythropoietic Protoporphyria

Bispebjerg Hospital

Status: Completed

Conditions: Erythropoietic Protoporphyria

Study type: Observational

Funder types: Other

Identifiers

NCT03682731

Erythropoietic protoporphyria

Details and patient eligibility

About

Background: Erythropoietic protoporphyria (EPP) is characterized by development of painful skin symptoms upon exposure to visible light dye to accumulation of the photoactive substance protoporphyrin IX (PpIX) in the skin.This study aimed to quantify the actual light exposure of patients with EPP during everyday life. The investigators further aimed to establish the associations between symptoms and light exposure, use of protective clothes, and erythrocyte PpIX concentration.

Enrollment: 14 patients

Sex: All

Ages: 12+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Diagnosed with erythropoietic protoporphyria
• Informed consent

Exclusion criteria

• None