Wednesday, June 18, 2014

"Longitudinal Study for All Porphyrias"

"Longitudinal Study for All Porphyrias"
 
The 6 Porphyria Consortium sites:   
 
§  Dr. Robert Desnick, Mount Sinai School of Medicine, New York City, NY
§  Dr. Herbert Bonkovsky, Carolinas Medical Center, Charlotte, NC
§  Dr. Karl Anderson, University of Texas Medical Branch, Galveston, TX
§  Dr. Joseph Bloomer, University of Alabama, Birmingham, AL
§  Dr. John Phillips, University of Utah School of Medicine, Salt Lake City, UT
§  Dr. Montgomery Bissell, University of California, San Francisco, CA
 
are conducting a 5 year study on all of the porphyrias sponsored by a grant from the Rare Diseases Clinical Research Network (RDCRN) of the National Institutes of Health (NIH). 
 
§  PURPOSE:  To learn more about the course of the disease by understanding its                                  natural history, symptoms and medical treatment.
§  PARTICIPATION CRITERIA:  You must have a diagnosed case of porphyria.
§  INVOLVEMENT
o   1st Phase - Enrollment - This requires a site visit where your information -  history and labs - will be collected.  If travel to the site is not possible, please call the site coordinator to discuss your other options.       
o   2nd Phase - One time annual follow-up, preferably at the site each year for 4 years.
 
If you are interested and/or have any questions, please call Desiree Lyon Howe on her cell phone:  713.857.0995

"Remember....Research is the key to your cure!"

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