Registry for patients with Pachyonychia Congenita
International Pachyonychia Congenita Research Registry
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 |
|---|---|
| Enrollment | 2000 (estimated) |
| Sex | All |
| Sponsor | Pachyonychia Congenita Project Academic / other |
| Locations | 1 site (Salt Lake City, Utah) |
| Trial ID | NCT02321423 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals clinically diagnosed with Pachyonychia Congenita or similar disorders.
Not a fit: Patients without a clinical diagnosis of Pachyonychia Congenita or related conditions may not benefit from this registry.
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 performed: While the approach of creating a patient registry is common, the specific focus on Pachyonychia Congenita is relatively novel and underexplored.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Clinical diagnosis of Pachyonychia Congenita or similar disorder Exclusion Criteria: * N/A
Where this trial is running
Salt Lake City, Utah
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.