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Pachyonychia Congenitia Project

Fighting for a cure. Connecting & helping patients. Empowering Research.

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PC Data

The Patient Registry collects data on PC, which guides research and drug development.

Please contact PC Project if you have a specific data inquiry at info@pachyonychia.org.

IPCRR PC Mutations chart Includes a list of each mutation for the five PC genes as well as the number of individuals/families for each one. Also, shows the percentages of identified patients by gene.

Use our Location and Demographic Charts to see a list of countries and states where confirmed PC patients reside.

This Growth Chart  shows a history of individuals who are recorded with PC Project (red line). The yellow line shows those from the red line who completed all steps to join the International PC Research Registry (IPCRR) including the online questionnaire, consent form and sending photos. This includes those who are in the testing process, have confirmed PC or they have been diagnosed with a different disorder. The green line shows the count of those in the IPCRR who are genetically confirmed with PC.

PC Images show each of the five types of PC and the variations in the PC syndrome.

IPCRR Data Summaries

Each link below contains a summary of the IPCRR Data and observations about each gene.

PC-K6a

 

PC-K6b

 

PC-K6c

 

PC-K16

 

PC-K17

 

PC All Genes

 

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PACHYONYCHIA CONGENITA PROJECT

P.O. Box 17850
Holladay, UT 84117

info@pachyonychia.org

801-987-8758

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