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.
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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Describing patterns and traits of Pachyonychia Congenita
Timeframe: Once a year