NCT02321423Recruiting
International Pachyonychia Congenita Research Registry
Source: ClinicalTrials.gov · Last updated 21 Nov 2018 · Not updated for over 12 months - ask the site whether it is still open
Brief summary (registry, in English)
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.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 2000 (estimated)
- First submitted
- 12 Dec 2014
- Start date
- Apr 2004
- Primary completion date
- Dec 2030
- Lead sponsor
- Pachyonychia Congenita Project
- NCT number
- NCT02321423
What you commit to
- Study type: Observational
- Planned participants: 2000
- From Apr 2004 to the primary completion date, Dec 2030
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- N/A
Who the study is looking for
- Clinical diagnosis of Pachyonychia Congenita or similar disorder
Sex: All · Accepts healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Pachyonychia Congenita Project Coordinator of this site? Confirm its status | Salt Lake City | United States | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.