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International Pachyonychia Congenita Research Registry
Sponsor: Pachyonychia Congenita Project
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.
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
2000
Start Date
2004-04
Completion Date
2030-12
Last Updated
2018-11-21
Healthy Volunteers
Yes
Conditions
Locations (1)
Pachyonychia Congenita Project
Salt Lake City, Utah, United States