International Pachyonychia Congenita Research Registry
ConditionPachyonychia Congenita
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorPachyonychia Congenita Project
About this trial
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.
Eligibility criteria
This trial accepts healthy volunteersQualifiers
Clinical diagnosis of Pachyonychia Congenita or similar disorder
Disqualifiers
N/A
Trial population
All persons with PC in all countries are being invited to register. It is not known how many persons have PC although it is known to be a very rare disease.
Trial design
Design model
Case-only
Time perspective
Cross-sectional
Treatments tested in this trial
Not listed
Trial groups
No trial groups listed
Trial outcomes
Primary outcomes
1
Describing patterns and traits of Pachyonychia Congenita
Time frame
Once a yearSponsors and contacts
Click on the lead sponsor to view all of their trials.
Source ClinicalTrials.gov