RecruitingNCT02321423

International Pachyonychia Congenita Research Registry


Sponsor

Pachyonychia Congenita Project

Enrollment

2,000 participants

Start Date

Apr 1, 2004

Study Type

OBSERVATIONAL

Conditions

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.


Eligibility

Plain Language Summary

Simplified for easier understanding

This trial is maintaining an international patient registry for people diagnosed with pachyonychia congenita (PC) — a rare genetic condition that typically causes severely thickened and painful nails, calluses on the soles of the feet, cysts, and in some cases mouth sores or hoarse voice. The registry collects data to help researchers understand how the disease varies between patients, track outcomes, and develop potential treatments for this uncommon condition. **You may be eligible if...** - You have been clinically diagnosed with pachyonychia congenita or a similar related disorder affecting your nails, skin, or mucous membranes - You are willing to share your health information and participate in the registry **You may NOT be eligible if...** - There are no stated exclusion criteria for this registry — anyone with a qualifying diagnosis may enroll regardless of age or location Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Locations(1)

Pachyonychia Congenita Project

Salt Lake City, Utah, United States

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NCT02321423


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