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 firstname.lastname@example.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.