Light Exposure Patterns and Symptoms Among Patients With Erythropoietic Protoporphyria

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT03682731

Enrollment

Registered

2018-09-25

Start date

2017-04-01

Completion date

2017-08-01

Last updated

2018-10-02

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Erythropoietic Protoporphyria

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.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

12 Years to No maximum

Healthy volunteers

Inclusion criteria

* Diagnosed with erythropoietic protoporphyria * Informed consent

Exclusion criteria

* None

Design outcomes

Primary

Measure	Time frame	Description
Actual light exposure	from April through June 2017	Actual light exposure of patients with erythropoietic protoporphyria

Countries

Denmark

Outcome results