Light Exposure Patterns and Symptoms Among Patients With Erythropoietic Protoporphyria

Bispebjerg Hospital14 enrolled

Overview

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.

Study Type

OBSERVATIONAL

Enrollment

Conditions

Erythropoietic Protoporphyria

Eligibility

Sex: ALLMin age: 12 Years

Medical Language ↔ Plain English

Inclusion Criteria: * Diagnosed with erythropoietic protoporphyria * Informed consent Exclusion Criteria: * None

Locations (2)

Bispebjerg Hospital

Copenhagen, Denmark

Bispebjerg Hospital

Copenhagen NV, Denmark

Outcomes

Primary Outcomes

Actual light exposure

Actual light exposure of patients with erythropoietic protoporphyria

Time frame: from April through June 2017

Data from ClinicalTrials.gov

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