International Pachyonychia Congenita Research Registry
Who can join
All ages · All sexes · Healthy volunteers welcome
Full eligibility criteria
Inclusion Criteria: * Clinical diagnosis of Pachyonychia Congenita or similar disorder Exclusion Criteria: * N/A
About the study
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.
Sponsor: Pachyonychia Congenita Project · Participants: 2,000 · Started: 2004-04
Contact the study team
- Holly A Evans · Phone: 8019878758
- Janice N Schwartz · Phone: 8019878758
Official record on ClinicalTrials.gov — NCT02321423
Locations in the U.S.
| Utah | Pachyonychia Congenita Project, Salt Lake City |
Conditions
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.