Xeroderma Pigmentosum Patient Experiences
- Conditions
- Xeroderma Pigmentosum
- 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
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
- Primary Outcome Measures
Name Time Method
- Secondary Outcome Measures
Name Time Method
Related Research Topics
Explore scientific publications, clinical data analysis, treatment approaches, and expert-compiled information related to the mechanisms and outcomes of this trial. Click any topic for comprehensive research insights.
What molecular mechanisms underlie UV-induced DNA repair defects in Xeroderma Pigmentosum (XP) subtypes?
How do photoprotective strategies compare to novel DNA repair enhancers in managing XP-related skin cancers?
Which genetic biomarkers in Xeroderma Pigmentosum (XP) correlate with differential quality of life outcomes post-survey?
What adverse events are associated with long-term sun avoidance in Xeroderma Pigmentosum (XP) patients and their management?
Are DNA repair pathway-targeting therapies or gene therapy approaches being explored for Xeroderma Pigmentosum (XP) beyond NCT01123694?
Trial Locations
- Locations (1)
Henry Ford Medical Center, New Center One
🇺🇸Detroit, Michigan, United States
Henry Ford Medical Center, New Center One🇺🇸Detroit, Michigan, United StatesMarsha Henderson, M.D.Contact313-916-6964Melody Eide, MD, MPHSub InvestigatorHenry W Lim, MDPrincipal InvestigatorMarsha Henderson, MDSub InvestigatorDanielle M Hawkins, BSSub Investigator
