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Trial record 1 of 8 for:    "Xeroderma pigmentosum"
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Xeroderma Pigmentosum Patient Experiences

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ClinicalTrials.gov Identifier: NCT01123694
Recruitment Status : Unknown
Verified May 2010 by Henry Ford Health System.
Recruitment status was:  Recruiting
First Posted : May 14, 2010
Last Update Posted : May 14, 2010
Information provided by:
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.

Condition or disease Intervention/treatment
Xeroderma Pigmentosum Other: Survey Study

Study Type : Observational
Estimated Enrollment : 15 participants
Observational Model: Case-Only
Time Perspective: Cross-Sectional
Official Title: Xeroderma Pigmentosum: A Survey of Patient Experiences
Study Start Date : July 2009
Estimated Primary Completion Date : July 2010
Estimated Study Completion Date : July 2010

Group/Cohort Intervention/treatment
Xeroderma Pigmentosum patients
Xeroderma Pigmentosum patients who attend Camp Sundown, a camp for children with this condition.
Other: Survey Study
Survey regarding quality of life

Information from the National Library of Medicine

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Ages Eligible for Study:   Child, Adult, Senior
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Study population will be a convenience sample of XP patients from Camp Sundown, a camp for children with XP.

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

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01123694

Contact: Danielle M Hawkins, B.S. 248-535-8322 hawki105@msu.edu

United States, Michigan
Henry Ford Medical Center, New Center One Recruiting
Detroit, Michigan, United States, 48202
Contact: Marsha Henderson, M.D.    313-916-6964      
Sub-Investigator: Melody Eide, MD, MPH         
Principal Investigator: Henry W Lim, MD         
Sub-Investigator: Marsha Henderson, MD         
Sub-Investigator: Danielle M Hawkins, BS         
Sponsors and Collaborators
Henry Ford Health System
Principal Investigator: Henry W Lim, M.D. Henry Ford Hospital Department of Dermatology

Responsible Party: Henry Lim, MD, Henry Ford Hospital Department of Dermatology
ClinicalTrials.gov Identifier: NCT01123694     History of Changes
Other Study ID Numbers: IRB #5672
First Posted: May 14, 2010    Key Record Dates
Last Update Posted: May 14, 2010
Last Verified: May 2010

Keywords provided by Henry Ford Health System:
xeroderma pigmentosum
quality of life

Additional relevant MeSH terms:
Xeroderma Pigmentosum
Precancerous Conditions
Skin Abnormalities
Congenital Abnormalities
Skin Diseases, Genetic
Genetic Diseases, Inborn
Photosensitivity Disorders
Skin Diseases
Pigmentation Disorders
DNA Repair-Deficiency Disorders
Metabolic Diseases
Infant, Newborn, Diseases