Recruiting

Observational Study

Sponsor:

Pachyonychia Congenita Project

Code:

NCT02321423

Conditions

Pachyonychia Congenita

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Accepted

Study Details

Brief 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.

Conditions

Pachyonychia Congenita

Study ID

NCT02321423

Start date

Apr, 2004

Status verified date

Nov, 2018

Completion date

Dec, 2030

Anticipated

Primary completion date

Dec, 2030

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Accepted

Inclusion Criteria:

  • Clinical diagnosis of Pachyonychia Congenita or similar disorder

Exclusion Criteria:

  • N/A

Study Design

Enrollment

2000 participants

Anticipated

Interventions and Outcome Measures

Primary outcome measure

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

Central Contacts and Locations

Central contacts

Holly A Evans

8019878758holly.evans@pachyonychia.org

Janice N Schwartz

8019878758jan.schwartz@pachyonychia.org

Locations

Pachyonychia Congenita Project

Recruiting

Salt Lake City, Utah, United States, 84117

Contacts

Janice Schwartz

801-987-8758jan.schwartz@pachyonychia.org

Holly Evans

8019878758holly.evans@pachyonychia.org

Principal Investigator:

C. David Hansen, MD

More Information

Sponsor

Pachyonychia Congenita Project

Last update posted

Nov 21, 2018

Last verified

Nov, 2018

Keywords

  • Nail Dystrophy
  • Plantar Keratoderma
  • Palmar Keratoderma
  • Leukokeratosis
  • Cysts
  • Pain
  • KRT17
  • KRT16
  • KRT6A
  • KRT6B
  • KRT6C

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-09. This information was provided to ClinicalTrials.gov by Pachyonychia Congenita Project on 2018-11-21.