International Pachyonychia Congenita Research Registry
Status: Recruiting
Location: See location...
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.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: t
View:
• Clinical diagnosis of Pachyonychia Congenita or similar disorder
Locations
United States
Utah
Pachyonychia Congenita Project
RECRUITING
Salt Lake City
Contact Information
Primary
Holly A Evans
holly.evans@pachyonychia.org
8019878758
Backup
Janice N Schwartz
jan.schwartz@pachyonychia.org
8019878758
Time Frame
Start Date: 2004-04
Estimated Completion Date: 2030-12
Participants
Target number of participants: 2000
Authors
Mary E Schwartz
Related Therapeutic Areas
Sponsors
Leads: Pachyonychia Congenita Project