Recruiting

Observational Study

Sponsor:

Henry Ford Health System

Code:

NCT01123694

Conditions

Xeroderma Pigmentosum

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Interventions

Survey Study

Study Details

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.

Conditions

Xeroderma Pigmentosum

Study ID

NCT01123694

Start date

Jul, 2009

Status verified date

May, 2010

Completion date

Jul, 2010

Anticipated

Primary completion date

Jul, 2010

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

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

Study Design

Enrollment

15 participants

Anticipated

Interventions and Outcome Measures

Arms

Xeroderma Pigmentosum patients

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

Interventions

Survey Study

Survey regarding quality of life

Central Contacts and Locations

Central contacts

Danielle M Hawkins, B.S.

248-535-8322hawki105@msu.edu

Locations

Henry Ford Medical Center, New Center One

Recruiting

Detroit, Michigan, United States, 48202

Contacts

Marsha Henderson, M.D.

313-916-6964

Principal Investigator:

Henry W Lim, MD

More Information

Sponsor

Henry Ford Health System

Last update posted

May 14, 2010

Last verified

May, 2010

Keywords

  • xeroderma pigmentosum
  • quality of life
  • DLQI
  • CDLQI

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-09. This information was provided to ClinicalTrials.gov by Henry Ford Health System on 2010-05-14.