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International Pachyonychia Congenita Research Registry

Study acronym: IPCRR
StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗

Record History

See every version on ClinicalTrials.gov ↗

  1. Primary completion date: Dec 2058 to Dec 2030v3 Show 4 more changesShow less
    • Enrollment target: 1800 to 2000
    • Study completion date: Dec 2030
    • Study description shortened, about 65 words
    • Site details revised
  2. Primary completion date: Dec 2028 to Dec 2058
    • Enrollment target: 1500 to 1800
    • Site contact updated
    • Study description shortened, about 1 word
    v2
  3. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
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.
Trial Details
NCT Number NCT02321423
Lead Sponsor Pachyonychia Congenita Project
Conditions
(from sponsor)		 Pachyonychia Congenita
Related terms Cysts, Leukoplakia, Pachyonychia Congenita, Pain
Enrollment 2,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov