IPCRR PC Project
PO Box 17850
Holladay, UT 84117
Email: info@pachyonychia.org
801-987-8758 (phone)
As a participant in the International Pachyonychia Congenita Research Registry (IPCRR), your Consent Form is on file as well as the de-identified data you have previously provided. The purpose of this Addendum #11 is to collect additional information requested by physicians and scientists who wish to collect more in-depth data on Pachyonychia Congenita as well as more information on specific symptoms.
The information will be gathered by an online survey from individuals in the IPCRR who have completed the Consent Form and Questionnaire and received genetic test results confirming PC.
This IPCRR Questionnaire Addendum #11c contains quality of life questions. Many researchers, physicians, and pharmaceutical companies want to know the impact of PC on patients on their lives and how PC affects their day to day activities. This addendum includes questions from a PC-QoL Index Questionnaire that PC Project helped to develop in 2013 and questions that were used previously at an FDA Externally-led Patient Focused Drug Development Meeting in 2018 via live poll. We would like to gather the most up-to-date information on quality of life from a larger PC population.