Xeroderma Pigmentosum Patient Experiences


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.

Full Title of Study: “Xeroderma Pigmentosum: A Survey of Patient Experiences”

Study Type

  • Study Type: Observational
  • Study Design
    • Time Perspective: Cross-Sectional
  • Study Primary Completion Date: July 2010


  • Other: Survey Study
    • Survey regarding quality of life

Arms, Groups and Cohorts

  • Xeroderma Pigmentosum patients
    • Xeroderma Pigmentosum patients who attend Camp Sundown, a camp for children with this condition.

Participating in This Clinical Trial

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

Gender Eligibility: All

Minimum Age: N/A

Maximum Age: N/A

Are Healthy Volunteers Accepted: No

Investigator Details

  • Lead Sponsor
    • Henry Ford Health System
  • Provider of Information About this Clinical Study
    • Henry Lim, MD, Henry Ford Hospital Department of Dermatology
  • Overall Official(s)
    • Henry W Lim, M.D., Principal Investigator, Henry Ford Hospital Department of Dermatology
  • Overall Contact(s)
    • Danielle M Hawkins, B.S., 248-535-8322, hawki105@msu.edu

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