Xeroderma Pigmentosum Patient Experiences

Xeroderma Pigmentosum Clinical Trial

Official title:

Xeroderma Pigmentosum: A Survey of Patient Experiences

Clinical Trial Details — Status: Unknown status

Administrative data

• NCT number: NCT01123694
• Other study ID #: IRB #5672
• Status: Unknown status
• Phase: N/A
• First received: May 12, 2010
• Last updated: May 12, 2010
• Start date: July 2009
• Est. completion date: July 2010

Study information

• Verified date: May 2010
• Source: Henry Ford Health System
• Contact: Danielle M Hawkins, B.S.
• Phone: 248-535-8322
• Email: hawki105[@]msu.edu
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

Recruitment information / eligibility

• Status: Unknown status
• Enrollment: 15
• Est. completion date: July 2010
• Est. primary completion date: July 2010
• Accepts healthy volunteers: No
• Gender: All
• Age group: N/A and older

Eligibility

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

Related Conditions & MeSH terms

• Ichthyosis
• Xeroderma Pigmentosum

Intervention

Other:
• Survey Study
Survey regarding quality of life

Locations

Country	Name	City	State
United States	Henry Ford Medical Center, New Center One	Detroit	Michigan

Sponsors (1)

Lead Sponsor	Collaborator
Henry Ford Health System

Country where clinical trial is conducted

United States,