Working...
ClinicalTrials.gov
ClinicalTrials.gov Menu
Trial record 39 of 44 for:    "porphyria"

Light Exposure Patterns and Symptoms Among Patients With Erythropoietic Protoporphyria

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.
ClinicalTrials.gov Identifier: NCT03682731
Recruitment Status : Completed
First Posted : September 25, 2018
Last Update Posted : October 2, 2018
Sponsor:
Information provided by (Responsible Party):
Ida M. Heerfordt, 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.

Condition or disease
Erythropoietic Protoporphyria

Layout table for study information
Study Type : Observational
Actual Enrollment : 14 participants
Observational Model: Cohort
Time Perspective: Prospective
Official Title: Light Exposure Patterns and Symptoms Among Patients With Erythropoietic Protoporphyria
Actual Study Start Date : April 1, 2017
Actual Primary Completion Date : August 1, 2017
Actual Study Completion Date : August 1, 2017





Primary Outcome Measures :
  1. Actual light exposure [ Time Frame: from April through June 2017 ]
    Actual light exposure of patients with erythropoietic protoporphyria



Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.


Layout table for eligibility information
Ages Eligible for Study:   12 Years and older   (Child, Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Patients with erythropoietic protoporphyria.
Criteria

Inclusion Criteria:

  • Diagnosed with erythropoietic protoporphyria
  • Informed consent

Exclusion Criteria:

  • None

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03682731


Locations
Layout table for location information
Denmark
Bispebjerg Hospital
Copenhagen NV, Denmark, DK-2400
Bispebjerg Hospital
Copenhagen, Denmark
Sponsors and Collaborators
Bispebjerg Hospital

Layout table for additonal information
Responsible Party: Ida M. Heerfordt, Principal Investigator, MD, PhD, Bispebjerg Hospital
ClinicalTrials.gov Identifier: NCT03682731     History of Changes
Other Study ID Numbers: Erythropoietic protoporphyria
First Posted: September 25, 2018    Key Record Dates
Last Update Posted: October 2, 2018
Last Verified: September 2018
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: Undecided

Layout table for additional information
Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No

Additional relevant MeSH terms:
Layout table for MeSH terms
Protoporphyria, Erythropoietic
Porphyrias, Hepatic
Liver Diseases
Digestive System Diseases
Skin Diseases, Genetic
Genetic Diseases, Inborn
Skin Diseases
Porphyrias
Metabolic Diseases