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9 Mar 2012

New Article on PC

A landmark study on PC has been released that will raise the profile of PC in the medical community. The largest study of PC patients from our IPCRR (Registry) has just been pre-published online by the premier medical journal for dermatologists, the Journal of the American Academy of Dermatology (JAAD).  This is the first major study published in the JAAD on PC since 1988. The participation of PC patients in PC Project's International Pachyonychia Congenita Research Registry (IPCRR) made this possible.  THANK YOU PC COMMUNITY MEMBERS!

Pain is documented for the first time in this study as having the most profound impact on the quality of life of PC patients, and that its source is beneath the callous. The study authors also urge doctors to identify their PC patient's specific gene mutation for optimal disease management as each of the four mutations linked to PC vary in their clinical expression.

PC Project is now working with scientists to discover what is causing this pain in patients' feet. We are looking at a number of possible therapies.  

Thanks to the PC patients for their contribution to,  and the scientists for their leadership of, this groundbreaking study.  

If you have not yet joined the Registry, please know that you can make a unique contribution to PC research through your participation in the Registry. Please join with us in this significant opportunity to change the face of PC research!

 

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