Registry for patients with Pachyonychia Congenita
Official title: International Pachyonychia Congenita Research Registry
Run by Pachyonychia Congenita Project · NCT02321423 · Data updated 2026-11-12
This study is collecting information from people with Pachyonychia Congenita to better understand the condition and help with future research.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 2000 (estimated) |
| Sponsor | Pachyonychia Congenita Project Academic / other |
| Locations | 1 site (Salt Lake City, Utah) |
| Status | Recruiting |
| Started | April 2004 |
| Main results expected | December 2030 |
| Study ends | December 2030 |
| Registry record updated | November 21, 2018 |
| Trial ID | NCT02321423 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this registry are individuals clinically diagnosed with Pachyonychia Congenita or similar disorders.
✕Probably not a fit
Patients without a clinical diagnosis of Pachyonychia Congenita or related conditions may not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
The International Pachyonychia Congenita Research Registry (IPCRR) is designed to gather comprehensive data from individuals affected by Pachyonychia Congenita, an ultra-rare and painful skin disorder. Participants complete an online questionnaire, submit photos of their condition, and may undergo genetic testing to help identify specific characteristics of the disorder. The registry aims to enhance understanding of Pachyonychia Congenita and facilitate future research efforts. The process is accessible, allowing participants to engage at their own pace and ensuring privacy throughout.
Why it matters
Potential benefit: If successful, this registry could lead to improved diagnosis and treatment options for patients with Pachyonychia Congenita.
How similar studies have gone: While the approach of creating a patient registry is common, the specific focus on Pachyonychia Congenita is relatively novel and underexplored.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Clinical diagnosis of Pachyonychia Congenita or similar disorder Exclusion Criteria: * N/A
Where it's running
-
Pachyonychia Congenita Project
Salt Lake City, Utah, United States Recruiting
Study contacts
- Principal investigator: C. David Hansen, MD — Pachyonychia Congenita Project
- Study coordinator: Holly A Evans
- Email: holly.evans@pachyonychia.org
- Phone: 8019878758
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Evaluating a gel treatment for adults with Pachyonychia Congenita
This study is testing a new gel treatment for adults with Pachyonychia Congenita to see how safe it is and how it works in the body over time.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.