We need your help. Because of your past participation, PC researchers know they can count on you as we continue to learn more about PC and its impact on your life.
We have three SHORT, but separate surveys that need to be filled out by PC patients.
The information in these surveys has been requested by researchers to better understand PC and the impact on you. Your name and contact information will not be shared – only your de-identified answers. Please complete each survey using the buttons/links below. When you finish with the first one, come back to this email to complete the second one, then the third. Each survey is important and is for three separate projects.
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.
Addendum #11a – Erythromelalgia PC Questionnaire
In this IPCRR Questionnaire Addendum #11a, we are investigating whether pachyonychia congenita is related to another skin condition known as erythromelalgia. Erythromelalgia is a rare condition which can cause episodes of redness and burning pain in the hands and feet which come and go. It is described as feet feeling “like they are on fire” and caused by exposure of the hands/feet to warm or cold conditions.
Addendum #11b – Foot Pain and Disability Index (FFI)
In this IPCRR Questionnaire Addendum #11b, many patients with pachyonychia congenita have significant pain and subsequent problems with normal day to day activities due to the way the condition affects their feet. We are interested to find out how much of a problem this is and whether there is a variation in this depending on the day or season. The hope is that once we quantify the size of the problem and can measure this objectively using the foot function index, we can use it to help assess new treatments in clinical trials. We have permission from the owners to use this questionnaire for our study.
As part of this study, we would like you to complete this survey again once each month for the next three months. We will also remind you.
Addendum #11c – Quality of Life for 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 the lives of patients 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 want to gather the most up-to-date information on quality of life from a larger PC population.
THANK YOU! Because of your incredible participation in the registry and in past surveys, we have learned so much about PC. All those surveys have resulted in publications that have brought greater awareness and understanding to PC. We expect these surveys will do the same.
Thanks so much for your help! We have THE BEST patient community ever!
