Xeroderma Pigmentosum Patient Experiences

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Disease Information

Descriptive Information
Brief Title † Xeroderma Pigmentosum Patient Experiences
Official Title † Xeroderma Pigmentosum: A Survey of Patient Experiences
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
Study Phase N/A
Study Type † Observational
Study Design † Observational Model: Case-Only, Time Perspective: Cross-Sectional
Primary Outcome Measure †
Secondary Outcome Measure †
Condition † Xeroderma Pigmentosum
Intervention † OtherSurvey Study
Study Arms / Comparison Groups Xeroderma Pigmentosum patients Xeroderma Pigmentosum patients who attend Camp Sundown, a camp for children with this condition.
Publications *

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information
Recruitment Status † Other
Estimated Enrollment † 15
Start Date † July 2009
Completion Date July 2010
Primary Completion Date July 2010
Eligibility Criteria † 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 Both
Ages N/A - N/A
Accepts Healthy Volunteers No
Contacts †† Danielle M Hawkins, B.S., 248-535-8322,
Location Countries † United States
Administrative Information
NCT ID † NCT01123694
Organization ID IRB #5672
Secondary IDs ††
Responsible Party
Study Sponsor † Henry Ford Health System
Collaborators ††
Investigators † Principal Investigator: Henry W Lim, M.D., Henry Ford Hospital Department of Dermatology
Information Provided By
Verification Date May 2010
First Received Date † May 12, 2010
Last Updated Date May 12, 2010
† Required WHO trial registration data element.
†† WHO trial registration data element that is required only if it exists.
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