Clinical Trial: International Pachyonychia Congenita Research Registry

Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational [Patient Registry]




Official Title:

Brief 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, physician notes from telephone consultation to validate questionnaire, free genetic testing.