Trial record 1 of 7 for:    "xeroderma pigmentosum"
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Xeroderma Pigmentosum Patient Experiences

The recruitment status of this study is unknown because the information has not been verified recently.
Verified May 2010 by Henry Ford Health System.
Recruitment status was  Recruiting
Information provided by:
Henry Ford Health System Identifier:
First received: May 12, 2010
Last updated: NA
Last verified: May 2010
History: No changes posted
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 Intervention
Xeroderma Pigmentosum
Other: Survey Study

Study Type: Observational
Study Design: Observational Model: Case-Only
Time Perspective: Cross-Sectional
Official Title: Xeroderma Pigmentosum: A Survey of Patient Experiences

Resource links provided by NLM:

Further study details as provided by Henry Ford Health System:

Estimated Enrollment: 15
Study Start Date: July 2009
Estimated Study Completion Date: July 2010
Estimated Primary Completion Date: July 2010 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
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


Genders Eligible for Study:   Both
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
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT01123694

Contact: Danielle M Hawkins, B.S. 248-535-8322

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
  More Information

No publications provided

Responsible Party: Henry Lim, MD, Henry Ford Hospital Department of Dermatology Identifier: NCT01123694     History of Changes
Other Study ID Numbers: IRB #5672 
Study First Received: May 12, 2010
Last Updated: May 12, 2010
Health Authority: United States: Institutional Review Board

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

Additional relevant MeSH terms:
Xeroderma Pigmentosum
Congenital Abnormalities
DNA Repair-Deficiency Disorders
Genetic Diseases, Inborn
Metabolic Diseases
Photosensitivity Disorders
Pigmentation Disorders
Precancerous Conditions
Skin Abnormalities
Skin Diseases
Skin Diseases, Genetic processed this record on February 09, 2016