International Pachyonychia Congenita Research Registry
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 consist
| Condition(s) | Pachyonychia Congenita |
|---|---|
| Status | Recruiting |
| Study type | Observational |
| 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. |
| Who can participate | Inclusion Criteria: * Clinical diagnosis of Pachyonychia Congenita or similar disorder Exclusion Criteria: * N/A |
| Sex | All |
| Accepts healthy volunteers | Yes |
| Lead sponsor | Pachyonychia Congenita Project |
| Locations | Salt Lake City, Utah, United States |
| Start date | 2004-04 |
| NCT ID | NCT02321423 |
| Official listing | https://clinicaltrials.gov/study/NCT02321423 |