Scientists launch Largest-Ever porphyria watch: 1,500 patients tracked for clues
NCT ID NCT01561157
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.
Disclaimer
Read more
Show less
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.
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.
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for ACUTE PORPHYRIAS are added.
By submitting, you agree to our Terms of use
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Show contact details
Enter your email to view the contact information for this study.
By submitting, you agree to our Terms of use
Study contacts
-
Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
-
Carolinas Medical Center and HealthCare System
TERMINATEDCharlotte, North Carolina, 28203, United States
-
Cleveland Clinic
RECRUITINGCleveland, Ohio, 44195, United States
Contact Email: •••••@•••••
Contact
Contact Email: •••••@•••••
-
Icahn School of Medicine at Mount Sinai
RECRUITINGNew York, New York, 10029, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
-
Massachusetts General Hospital
NOT_YET_RECRUITINGBoston, Massachusetts, 02114, United States
Contact
Contact Email: •••••@•••••
Contact Email: •••••@•••••
-
Thomas Jefferson University
RECRUITINGPhiladelphia, Pennsylvania, 19107, United States
Contact
Contact Email: •••••@•••••
-
University of Alabama, Birmingham
RECRUITINGBirmingham, Alabama, 35294, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
-
University of California, Los Angeles
NOT_YET_RECRUITINGLos Angeles, California, 90095, United States
Contact
-
University of California, San Francisco
RECRUITINGSan Francisco, California, 94143, United States
Contact Email: •••••@•••••
Contact
-
University of Illinois at Chicago
NOT_YET_RECRUITINGChicago, Illinois, 60637, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
-
University of Miami
RECRUITINGMiami, Florida, 33136, United States
Contact
Contact Email: •••••@•••••
Contact Email: •••••@•••••
-
University of Minnesota
RECRUITINGMinneapolis, Minnesota, 55455, United States
Contact Email: •••••@•••••
Contact Email: •••••@•••••
Contact
-
University of Texas Health Science Center at Houston
NOT_YET_RECRUITINGHouston, Texas, 77030, United States
Contact
-
University of Texas Medical Branch
RECRUITINGGalveston, Texas, 77555, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
-
University of Utah
RECRUITINGSalt Lake City, Utah, 84132, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
-
University of Washington
RECRUITINGSeattle, Washington, 98195, United States
Contact Email: •••••@•••••
Contact
-
Wake Forest University Health Sciences
RECRUITINGWinston-Salem, North Carolina, 27106, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact