Last updated on February 2018

Oral Iron for Erythropoietic Protoporphyrias


Brief description of study

In the medical literature there are conflicting reports on whether iron improves symptoms in patients with EPP and XLP. Giving iron to people who are iron deficient is thought to improve EPP symptoms. However, this has never been systematically tested. Therefore, the purpose of this study is to determine the effect of oral iron for EPP and XLP patients.

Detailed Study Description

This is a clinical trial, which means its purpose is to study an intervention or treatment. In this study all patients with EPP or XLP will be given a standard dose of iron pills and monitored for one year. There is currently no effective Food and Drug Administration (FDA) approved treatment for EPP or XLP in the US. Giving iron to patients with low ferritin (a measure of body iron stores) levels may help improve their EPP symptoms by decreasing erythrocyte protoporphyrin levels.

Patients will be asked come to the study site once every three months over the course of a year for a total of five visits. At these visits the study doctors will check in with participants and some blood and urine samples will be taken. Participants will not be charged for any of the lab tests that are being done for part of this study alone. In between these study visits there will be phone call to check in and see how participants are doing. All patients in this study will receive iron pills at no cost to them.

Clinical Study Identifier: NCT02979249

Contact Investigators or Research Sites near you

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Joseph Bloomer, MD

University of Alabama, Birmingham
Birmingham, AL United States
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Montgomery D Bissell, MD

University of California
San Francisco, CA United States
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Manisha Balwani, MD

Icahn School of Medicine at Mount Sinai
New York, NY United States
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Herbert L Bonkovsky, MD

Wake Forest University Health Sciences
Winston Salem, NC United States
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Karl E Anderson, MD

University of Texas Medical Branch
Galveston, TX United States
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John Phillips, PhD

University of Utah
Salt Lake City, UT United States
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Recruitment Status: Open


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