Major study launched to solve mysteries of rare, painful blood disease
NCT ID NCT01561157
Summary
This study aims to track 1,500 people with rare porphyria blood disorders over many years to better understand how the diseases progress, how treatments work, and what affects patients' quality of life. Researchers will collect health information, lab results, and genetic data to learn more about these poorly understood conditions. The goal is to gather knowledge that can help improve future care and develop better treatments.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes NO responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Carolinas Medical Center and HealthCare System
TERMINATEDCharlotte, North Carolina, 28203, United States
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Cleveland Clinic
NOT_YET_RECRUITINGCleveland, Ohio, 44195, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Email: •••••@•••••
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Icahn School of Medicine at Mount Sinai
RECRUITINGNew York, New York, 10029, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Massachusetts General Hospital
RECRUITINGBoston, Massachusetts, 02114, United States
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Contact Phone: •••-•••-•••• Email: •••••@•••••
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Thomas Jefferson University
RECRUITINGPhiladelphia, Pennsylvania, 19107, United States
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Contact Email: •••••@•••••
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University of Alabama, Birmingham
RECRUITINGBirmingham, Alabama, 35294, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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University of California, Los Angeles
NOT_YET_RECRUITINGLos Angeles, California, 90095, United States
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University of California, San Francisco
RECRUITINGSan Francisco, California, 94143, United States
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Contact Phone: •••-•••-•••• Email: •••••@•••••
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University of Illinois at Chicago
RECRUITINGChicago, Illinois, 60637, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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University of Miami
RECRUITINGMiami, Florida, 33136, United States
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Contact Email: •••••@•••••
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University of Minnesota
RECRUITINGMinneapolis, Minnesota, 55455, United States
Contact Email: •••••@•••••
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University of Texas Medical Branch
RECRUITINGGalveston, Texas, 77555, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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University of Utah
RECRUITINGSalt Lake City, Utah, 84132, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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University of Washington
RECRUITINGSeattle, Washington, 98195, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Wake Forest University Health Sciences
RECRUITINGWinston-Salem, North Carolina, 27106, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
Conditions
Explore the condition pages connected to this study.