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

Sponsor:

Information provided by:

Henry Ford Health System

ClinicalTrials.gov Identifier:

NCT01123694

First received: May 12, 2010

Last updated: NA

Last verified: May 2010

History: No changes posted

Purpose

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:

Genetics Home Reference related topics: hystrix-like ichthyosis with deafness lamellar ichthyosis nonbullous congenital ichthyosiform erythroderma xeroderma pigmentosum

U.S. FDA Resources

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

Eligibility

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.

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

Contacts and Locations

Please refer to this study by its ClinicalTrials.gov identifier: NCT01123694

Contacts

Contact: Danielle M Hawkins, B.S.

248-535-8322

hawki105@msu.edu

Locations

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

Investigators

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
ClinicalTrials.gov 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
DLQI
CDLQI

Additional relevant MeSH terms:

Xeroderma Pigmentosum
Ichthyosis
Skin Abnormalities
Congenital Abnormalities
Infant, Newborn, Diseases
Keratosis
Skin Diseases
Precancerous Conditions

Neoplasms
Skin Diseases, Genetic
Genetic Diseases, Inborn
Photosensitivity Disorders
Pigmentation Disorders
DNA Repair-Deficiency Disorders
Metabolic Diseases

ClinicalTrials.gov processed this record on May 19, 2013

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