International Pachyonychia Congenita Research Registry

Recruiting now

Conditions studied: Pachyonychia Congenita

In brief

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 facts

Study ID

NCT02321423

Run by

Pachyonychia Congenita Project

People needed

2000

Starts

2004-04-01

Expected to finish

2030-12-01

Last updated by the study team

2018-11-21

Who can join

Age: any. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• Clinical diagnosis of Pachyonychia Congenita or similar disorder

You may not qualify if…

• N/A

Where it is running

• Pachyonychia Congenita Project — Salt Lake City, Utah, United States (enrolling)

Full record on ClinicalTrials.gov

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