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International Pachyonychia Congenita Research Registry

Pachyonychia Congenita Project · NCT02321423

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Opens the official ClinicalTrials.gov record, with the study team’s contacts. Bored Studies doesn’t enroll anyone.

Key facts

Compensation
Not posted. Ask the study team before screening.
Who can join
Any age listed · All sexes
Healthy volunteers
Accepted
Study type
Observational
Target enrollment
2000
US sites recruiting
1
Study start
April 2004
Record last updated
November 21, 2018

Status re-checked against ClinicalTrials.gov within the last 12 hours.

What the study is about

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

Eligibility criteria

Copied from the official record. The study team makes the final decision at screening.

Show full criteria

Inclusion Criteria

  • Clinical diagnosis of Pachyonychia Congenita or similar disorder

Exclusion Criteria

  • N/A

Recruiting US locations

  • Pachyonychia Congenita Project

    Salt Lake City, UT 84117

    Site contact: Janice Schwartz · 801-987-8758 · jan.schwartz@pachyonychia.org

Study contacts (from the official record)

  • Holly A Evans · 8019878758 · holly.evans@pachyonychia.org
  • Janice N Schwartz · 8019878758 · jan.schwartz@pachyonychia.org
All healthy volunteers studies in Utah →
International Pachyonychia Congenita Research Registry (NCT02321423) | Bored Studies