Xeroderma Pigmentosum Patient Experiences

• Conditions: Xeroderma Pigmentosum
• Interventions: Other: Survey Study

• Registration Number: NCT01123694
• Lead Sponsor: Henry Ford Health System

Brief Summary

Xeroderma Pigmentosum (XP) is a rare skin condition that causes extreme sensitivity to the sun and an increased incidence of skin cancers. The purpose of this study is to find out more about XP patient experiences and their quality of life.

Detailed Description

Not available

Study Timeline

• Study Start: 2009-07
• Status Verified: 2010-05
• Study First Submitted: 2010-05-12
• Study First Submitted QC: 2010-05-12
• Last Update Submitted: 2010-05-12
• Study First Posted: 2010-05-14
• Last Update Posted: 2010-05-14
• Primary Completion: 2010-07
• Study Completion: 2010-07

Recruitment & Eligibility

• Status: UNKNOWN
• Sex: All
• Target Recruitment: 15

Inclusion Criteria

• Confirmed diagnosis of xeroderma pigmentosum
• Any age
• Access to a public or private computer

Exclusion Criteria

• Patients who do not have a confirmed diagnosis of XP
• Patients under 18 who do not have a parent/guardian able to read or speak English
• Patients who are unable to read or speak English

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
Xeroderma Pigmentosum patients	Survey Study	Xeroderma Pigmentosum patients who attend Camp Sundown, a camp for children with this condition.

Trial Locations

Locations (1)

Henry Ford Medical Center, New Center One; 🇺🇸 Detroit, Michigan, United States