Light Exposure Patterns and Symptoms Among Patients With Erythropoietic Protoporphyria

Completed

• Conditions: Erythropoietic Protoporphyria

• Registration Number: NCT03682731
• Lead Sponsor: Bispebjerg Hospital

Brief Summary

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.

Detailed Description

Not available

Study Timeline

• Study Start: 2017-04-01
• Primary Completion: 2017-08-01
• Study Completion: 2017-08-01
• Status Verified: 2018-09
• Study First Submitted: 2018-09-21
• Study First Submitted QC: 2018-09-24
• Study First Posted: 2018-09-25
• Last Update Submitted: 2018-10-01
• Last Update Posted: 2018-10-02

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 14

Inclusion Criteria

• Diagnosed with erythropoietic protoporphyria
• Informed consent

Exclusion Criteria

• None

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Actual light exposure	from April through June 2017	Actual light exposure of patients with erythropoietic protoporphyria

Trial Locations

Locations (1)

Bispebjerg Hospital; 🇩🇰 Copenhagen, Denmark