Scientists launch Largest-Ever porphyria watch: 1,500 patients tracked for clues

NCT ID NCT01561157

Recruiting now Knowledge-focused Sponsor: The American Porphyrias Expert Collaborative Source: ClinicalTrials.gov ↗

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study follows 1,500 people with porphyria over many years to learn how the disease progresses, what symptoms appear, and how it affects pregnancy and lifespan. Researchers will collect medical records and lab results to create a clearer picture of the condition. No new treatments or drugs are being tested.

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Conditions

The condition(s) this trial relates to.

acute intermittent porphyria Coproporphyria cutaneous porphyria erythropoietic protoporphyria hepatic porphyria porphyria

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

ACUTE PORPHYRIAS CUTANEOUS PORPHYRIAS

Contacts and locations

Locations

Carolinas Medical Center and HealthCare System
TERMINATED

Charlotte, North Carolina, 28203, United States
Cleveland Clinic
RECRUITING

Cleveland, Ohio, 44195, United States
Icahn School of Medicine at Mount Sinai
RECRUITING

New York, New York, 10029, United States
Massachusetts General Hospital
NOT_YET_RECRUITING

Boston, Massachusetts, 02114, United States
Thomas Jefferson University
RECRUITING

Philadelphia, Pennsylvania, 19107, United States
University of Alabama, Birmingham
RECRUITING

Birmingham, Alabama, 35294, United States
University of California, Los Angeles
NOT_YET_RECRUITING

Los Angeles, California, 90095, United States
University of California, San Francisco
RECRUITING

San Francisco, California, 94143, United States
University of Illinois at Chicago
NOT_YET_RECRUITING

Chicago, Illinois, 60637, United States
University of Miami
RECRUITING

Miami, Florida, 33136, United States
University of Minnesota
RECRUITING

Minneapolis, Minnesota, 55455, United States
University of Texas Health Science Center at Houston
NOT_YET_RECRUITING

Houston, Texas, 77030, United States
University of Texas Medical Branch
RECRUITING

Galveston, Texas, 77555, United States
University of Utah
RECRUITING

Salt Lake City, Utah, 84132, United States
University of Washington
RECRUITING

Seattle, Washington, 98195, United States
Wake Forest University Health Sciences
RECRUITING

Winston-Salem, North Carolina, 27106, United States