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Clinical Trials/NCT03682731
NCT03682731CompletedNot Applicable

Light Exposure Patterns and Symptoms Among Patients With Erythropoietic Protoporphyria

Bispebjerg Hospital1 site in 1 country14 target enrollmentStarted: April 1, 2017Last updated:
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Conditions

Trial Snapshot

Phase
Not Applicable
Status
Completed
Enrollment
14
Locations
1
Primary Endpoint
Actual light exposure
Study OverviewStudy DesignEligibility CriteriaOutcomesInvestigatorsSitesRecords & IdentifiersSimilar Trials

Study Overview

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.

Study Design

Study Type
Observational
Observational Model
Cohort
Time Perspective
Prospective

Eligibility Criteria

Ages
12 Years to — (Child, Adult, Older Adult)
Sex
All
Accepts Healthy Volunteers
No

Inclusion Criteria

  • •Diagnosed with erythropoietic protoporphyria
  • •Informed consent

Exclusion Criteria

  • Not provided

Outcomes

Primary Outcomes

Actual light exposure

Time Frame: from April through June 2017

Actual light exposure of patients with erythropoietic protoporphyria

Secondary Outcomes

No secondary outcomes reported

Investigators

Sponsor Class
Other
Responsible Party
Principal Investigator
Principal Investigator

Ida M. Heerfordt

Principal Investigator, MD, PhD

Bispebjerg Hospital

Study Sites (1)

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