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Study identifier: NCT01561157 Synced from ClinicalTrials.gov · July 29, 2026
● Recruiting

Longitudinal Study of the Porphyrias

Condition: Acute Porphyrias · Cutaneous Porphyrias  ·  Sponsor: The American Porphyrias Expert Collaborative

PhaseN/A
Planned participants1500
Who can joinAll sexes, 1 Minute to no upper limit
Healthy volunteersNo

About this study

The objective of this protocol is to conduct a longitudinal multidisciplinary investigation of the human porphyrias including the natural history, morbidity, pregnancy outcomes, and mortality in people with these disorders.

This description comes directly from the study's public registry record.

Talk to the study team

Kristen P Wheeden, DrPH  ·  301-461-9889  ·  kristen@porphyria.org

Always discuss trial participation with your own doctor first.

Locations (16)

University of Alabama, BirminghamBirmingham, Alabama, United StatesRecruiting
University of California, Los AngelesLos Angeles, California, United StatesNot Yet Recruiting
University of California, San FranciscoSan Francisco, California, United StatesRecruiting
University of MiamiMiami, Florida, United StatesRecruiting
University of Illinois at ChicagoChicago, Illinois, United StatesNot Yet Recruiting
Massachusetts General HospitalBoston, Massachusetts, United StatesNot Yet Recruiting
University of MinnesotaMinneapolis, Minnesota, United StatesRecruiting
Icahn School of Medicine at Mount SinaiNew York, New York, United StatesRecruiting
Carolinas Medical Center and HealthCare SystemCharlotte, North Carolina, United StatesTerminated
Wake Forest University Health SciencesWinston-Salem, North Carolina, United StatesRecruiting
Cleveland ClinicCleveland, Ohio, United StatesRecruiting
Thomas Jefferson UniversityPhiladelphia, Pennsylvania, United StatesRecruiting

+ 4 more locations — full list on the registry record.

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Source record: clinicaltrials.gov/study/NCT01561157