International Pachyonychia Congenita Research Registry
Pachyonychia Congenita Project
Summary
International Pachyonychia Congenita Research Registry (IPCRR) is a patient registry for those suffering from Pachyonychia Congenita (PC). PC is an ultra-rare extremely painful skin disorder that causes painful blisters and callus on feet and sometimes hands, thickened nails, cysts and other features. The IPCRR consists of a questionnaire, patient photos, optional physician notes from telephone consultation to validate questionnaire and free genetic testing.
Description
HOW TO PARTICIPATE IN IPCRR Step One: The IPCRR forms are available online at http://www.pachyonychia.org/patient-registry/. The Consent Form protects your privacy and 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 pre…
Eligibility
- Age range
- Not specified
- Sex
- All
- Healthy volunteers
- Yes
Inclusion Criteria: * Clinical diagnosis of Pachyonychia Congenita or similar disorder Exclusion Criteria: * N/A
Location
- Pachyonychia Congenita ProjectSalt Lake City, Utah