International Pachyonychia Congenita Research Registry

Part of paid clinical trials in Salt Lake City, Utah.

Sponsor
Pachyonychia Congenita Project
Study ID
NCT02321423
Status
Recruiting
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Conditions

  • Pachyonychia Congenita

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Accepted

Study Details

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 Dates

Start date
Apr 30, 2004
Status verified
Nov 2018
Primary completion
Dec 31, 2030
Completion
Dec 31, 2030

Study Design

Enrollment
2,000 participants (estimated)

Primary Outcome Measure

Describing patterns and traits of Pachyonychia Congenita [ Time Frame: Once a year ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Pachyonychia Congenita ProjectSalt Lake CityUtah84117
Janice Schwartz
[email protected]
801-987-8758
Holly Evans
[email protected]
8019878758
C. David Hansen, MD (PRINCIPAL_INVESTIGATOR)

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