International PC Research Registry (IPCRR)
The registry forms are now available online.
for both new registrations and to update your data.Your participation really matters!
1. Fill out the online questionnaire and consent form.
2. Provide the photos required for the physician evaluation.
3. You will receive a free telephone consultation with a leading PC physician.
4. If referred for genetic testing, you will receive a sample collection kit for saliva collection and free genetic testing (a $2500 value).
For all who have already completed the registry forms, thank you! And, we are excited that you are now able to update and add to your information by simply completing the forms again (and providing updated images). We suggest doing this at least once each year. This will create, for the first time, an updated digital record of PC. This very important 'life history' information is valuable and often requested by researchers.
We hope parents will enter the registry data for their children twice a year for those under five and at least each year or more often as things change for their children. Adults may update annually or at any time they notice a change in their PC.
The Way To Find The Cure. Every patient is important!
It will take you about 30 minutes to complete the forms online and the benefits for you, and for others, are many. There is no charge for any service provided by PC Project. All of our work is supported by donations to our charity.
Benefits for You
- First step will be a free one-on-one consultation with a leading PC dermatologist
- Confidential, state-of-the-art genetic testing provided at no cost to you or family
- 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
- Connection with others with PC from around the world and sharing of insights and strategies
- Able to participate in PC Patient Chat on Facebook
- Share your story on the PC website to help others know about PC (not required)
- Knowledge that you are doing everything possible to help yourself and your condition
Benefits for Others
- Your unique information adds to the growing knowledge, profile and possibility of finding a cure for PC.
- Outreach to others by connecting, building and strengthening the community of people with this rare condition.
- Research done now will help those now 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.
Our numbers are few! Each patient really counts!
How to Participate
Step One. The IPCRR forms are now available online. The Consent Form protects your privacy. The Questionnaire gathers important details that distinquish 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. The physician will discuss these questions with you during the telephone consultation. Since the physicians will not meet you in person, the photos of your PC are very important.
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. Note: If you do not have access to a computer and wish to have the IPCRR forms mailed, please contact PC Project.
Step Three. When your Consent Form, Questionnaire and Photos are received by PC Project, a telephone consultation will be scheduled with one of the PC physicians at a time convenient for you both. The physician will review the photos and questionnaire responses, and will discuss any questions you may have. There is no cost to you for this consultation.
Step Four. If you request genetic testing, the physician will discuss it with you and will make the referral for free testing. You will then be sent the special saliva test kit (no travel required). Usually only saliva is needed and from only one family member. The sample is collected by spitting into the vial in the kit and mailing it 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, but the testing begins as soon as your sample arrives.
When initial test results are identified, a second confirming test is required and you will be sent a mouth swab kit. This requires simply swabbing the inside of the cheek with a soft brush from the kit and mailing to the laboratory. This second test is a legal requirement in the United States and is in place to ensure accurate diagnosis of genetic disorders.
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 very valuable 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 reported anonymously. There is no cost to you for any of these tests or for the consultation. You may also request additional consultations as needed.