Wednesday, December 5, 2012

Important Research Request.......


Important Research Request.......

The following is a request from The Porphyrias Consortium:
PORPHYRIA SPECIALIST MEMBERS:  Drs. Karl Anderson, Montgomery Bissell, Joseph Bloomer, Herbert Bonkovsky, Robert Desnick, John Phillips.

           Thank you for your interest in the Contact Registry of the Porphyrias Consortium, which is part of the Rare Diseases Clinical Research Network supported by the National Institutes of Health. The Contact Registry is important in helping us learn more about the porphyrias.


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New Survey Now Available.......

We are proud to announce a new feature for the Porphyrias Contact Registry. There is an additional survey available which will allow you to enter additional information about your medical history. The additional survey will take approximately 5-10 minutes to complete and will help us understand more about your specific porphyria. You may also update information you previously entered. All information will be kept confidential.
 To enable this feature, log in to your account through the following link:http://rarediseasesnetwork.epi.usf.edu/porphyrias/register/index.htm.


·         On the right hand side of the screen, click on your type of porphyria.
·         Sign in. You will be asked to sign a new consent form.
·         Update your contact information.

 If you have questions on how to log in or join the Registry, please contact:


 Denise Shereff, MLIS, AHIP
 Contact Registry Administrator
 RDCRN Data Management and Coordinating Center
 University of South Florida
 College of Medicine

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