International PC Research Registry (IPCRR)
The Way To Find The Cure: Every Patient is Important!
If you think you or someone you know has Pachyonychia Congenita (PC), please join the registry to share information about living with your skin condition. There are many benefits for you and for others who suffer from this rare, painful disorder.
Please click here to access the registry forms by signing in or creating an account.
Every patient needs their own account (username and password) to access the questionnaire. If needed, the
same email can be used for multiple patient accounts. For example, if a physician or parent is registering
more than one patient/family member, they will need to create an account for each person with PC, but
they can still use the same email if the individual patient doesn’t have one. Filling out the online forms will take about 30 minutes. There is no charge for participating in the registry or any service provided by PC Project. All our programs are supported by donations to our charity.
NOTE: If you are already connected with PC Project or you have already registered, sign in and click the “Forgot username/password” button. You will then receive an email with sign in information. If you previously joined the registry, some of your existing answers will pull into the questionnaire. At that point, you will be able to answer the new questions and update your existing information.
The easiest way to complete the forms is by completing the forms online using the above access link. However, if you would like a paper copy of the forms you can use the link below or contact PC Project to mail you a copy.
WHY EVERY PERSON WHO THINKS THEY HAVE PC SHOULD JOIN THE FREE, CONFIDENTIAL IPCRR REGISTRY
- To verify a definite diagnosis of PC
- To understand the implications of PC
- To pursue best treatment practices for PC
- To connect with others who understand and live with PC
- To collect data about PC
- To comprehend what is true about PC and what are myths
- To gather a body of genetically confirmed patients to participate in studies and clinical trials
- To educate scientists and physicians about PC
- To share advice and suggestions for taking care of PC
- To build a PC community
BENEFITS FOR YOU
- FREE, confidential, state-of-the-art genetic testing to confirm diagnosis, if needed
- FREE, one-on-one confidential consultation with a leading PC dermatologist, if needed
- Ongoing support for disability forms for insurance, handicap parking passes, disability claims, etc.
- Access to the most up-to-date advancements in research, treatments, and products adapted to your specific condition
- Ability to connect with others with PC from around the world, to share insights and coping strategies
- Access to the private PC Patient Chat on Facebook
- Option to share your story on the PC website or with researchers and clinicians to help others know about PC (not required)
- To know that you are doing everything possible towards finding a cure now
BENEFITS FOR OTHERS
- Your unique information will add to the growing knowledge, profile, and possibility of finding effective treatments and ultimately a cure for PC
- You will help with outreach to others by connecting, building and strengthening the community of people with this rare condition
- Research done now will help those with PC and future generations
The IPCRR is central to our success in developing therapies and a cure for PC. There are a number of studies currently underway. We are making progress because of everyone who has registered. Your file is a medical record file so your personal information is confidential and protected by privacy laws. You are so important! Thanks to each and every one of you who have participated or will participate.
PC is Rare. Each patient and their information really counts!
HOW TO PARTICIPATE
Step One: Register/sign in on this page. This will allow access to the IRB approved (WIRB 20040468) Consent form and Questionnaire, along with the ability to upload photos of your symptoms. You can save as you go and update previous answers at any time. The Consent Form protects your privacy. The Questionnaire gathers important details that distinguish PC from other conditions and helps to identify specific characteristics of each type of PC. You may stop and start as often as needed before completing the forms. If you are not certain about an answer, you may skip that question.
Step Two: Take photos as shown in the Questionnaire sample photo page. You can upload the images online with the Questionnaire. If you prefer, you may email the photos to PC Project. Photos of the PC symptoms are very important.
Step Three: When your Consent Form, Questionnaire, and Photos are received by PC Project, we will have an intake call with you to review your information and to discuss the next steps.
Step Four: If referred for genetic testing, you will then be sent a small, special saliva test kit (no travel required). Usually, only saliva is needed and from only one family member with PC. The sample is collected by spitting into the vial in the kit and then mailing the kit back to PC Project in the envelope provided. Genetic testing is complex and time-consuming — it is not like a sugar test or pregnancy test – and can take many months to be completed.
When the confirming results are received, a full genetic testing report is provided to you with precise information and suggestions specific to your condition. You may find the report valuable in working with physicians or other medical providers as well as for school personnel, employers, disability hearings, or other special needs. All information is held confidentially by PC Project and the research data is reported anonymously. There is no cost to you for any of these tests. You may also request additional consultations as needed.
FROM PC PATIENTS: ADVANTAGES OF JOINING THE FREE IPCRR PATIENT REGISTRY
“Being part of PC project has produced great changes in my life. I am 73 years old and until two years ago I did not know what was wrong with my feet. I knew they were ugly and caused tremendous pain and I never let anyone except my wife and boys see my feet. I never talked to friends or relatives about my condition. Giving it a name and knowing the cause has made it much easier to deal with it. I can tell people what is wrong and why it’s wrong. I wish I knew all this when I was a kid. I think life would have been much easier. I still have to deal with the pain every day but at least I understand why it’s there. Thanks PC Project!”
“It is so wonderful not to be alone and to have hope!”
“Support and information from others with PC and access to professional support. Being able to help other PCers with advice. Being listened to by people who understand (as I always found PC was very isolating).”
“For me, it’s knowing there are others out there with the same or very similar condition. Literally EVERYONE in the PC family are amazing. I see everyone within the PC group as part of my family.”
“Advice and support from people who can empathize are the small things that make a huge difference, and it also gives people the priceless gift of hope. As cliche as it is, people certainly have a lot to gain and absolutely nothing to lose from joining the registry.”
“Our PC family makes life much easier!”
“I would hide my face at 11 because I was so insecure and shy. Now at almost 24 years old I can 100% say that you people have changed my life and I honestly don’t know if I’d be alive today if things were different.”
“The IPCRR Registry is important for research to find treatments and cures. Scientists and scientific organizations see the Registry as a way to easily access PC patients to volunteer as subjects for clinical trials.”
“Because when a treatment and/or cure is found, I want to be the first to hear about it.”
“Through being registered we get support from others with PC around the globe.”
“Being in the “older” generation, I have to say it’s a great feeling knowing our family isn’t the only one who has this problem. Growing up no one we ever met was like us. We were taught to hide our nails and feet at all times. It was an awful way to grow up. Always nervous someone would see and I would be in trouble for something I really couldn’t control.”
“Knowing you are not alone is a big help. Sharing coping strategies is a big help. Others have tried lots of things and some help more than others, but it’s good to learn how to get through each day when some days the pain is unbearable, and knowing others manage to get through it.”
“Having an answer. Whether it’s PC or something else, at least you know that much more about what you have.”
“Joining the community and being able to share your feelings, struggles and reality with PC and having others understand and offer support.”
“I’m so glad that my son met a dermatologist in Salt Lake that knew about PC! After a family member was genetically tested we finally knew what we had. It is still wonderful to know that it is nothing we did or didn’t do as children, with our shoes etc.”
“To be able to directly respond to other people’s questions with scientifically correct information and stop the constant suggested “cures” from the completely uninformed.”
“I have had to tell doctors I DO NOT have a fungus, it was the way I was born, I never knew what it was called or what I had. We as a family were in the dark. Then we got told we had something else. It never really fit but hey they are doctors so we believed them. Now with genetic testing I know exactly what I have and feel we are not alone.”
“I have never met anyone with this condition. I have just recently found out I have PC. I now want to know more and help in any way I can to make things better for the younger generation coming up with this.”
“Being able to research exactly what I have and understand it better is such a relief. I go around educating people all the time. Especially doctors.”
“I’m sorry but the old adage, misery loves company sums it up for me. Then a bonus that some research could find us relief – hallelujah!“
“You can post your questions and see what others advise or recommend. Just having other folks out there who share your disease is an educational experience you may never get from a foot doctor or dermatologist. Why? Because the medical field is learning from us. How cool is that. Join the registry and give yourself the opportunity to better understand your condition. Believe me, it’s a win-win!”
“The confirmation of the FREE genetic test results can be essential to someone for a disability case or to assist in certain quests to find various doctors.”
“Scientists took a chance on us because they knew we had willing patients who desperately need treatments. The registry data has told them that. And then the registry patients have risen to the occasion as we knew they would to participate in studies. I wish every patient could catch the vision and join the registry to be “counted for a cure” or even “counted for a treatment.”