Xeroderma Pigmentosum Patient Experiences

May 12, 2010 updated by: Henry Ford Health System

Xeroderma Pigmentosum: A Survey of Patient Experiences

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.

Study Overview

Status

Unknown

Conditions

Intervention / Treatment

Study Type

Observational

Enrollment (Anticipated)

15

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • United States
    • Michigan
      • Detroit, Michigan, United States, 48202
        • Recruiting
        • Henry Ford Medical Center, New Center One
        • Contact:
          • Marsha Henderson, M.D.
          • Phone Number: 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

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • ADULT
  • OLDER_ADULT
  • CHILD

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

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.

Description

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 Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

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

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Henry Ford Health System

Investigators

  • Principal Investigator: Henry W Lim, M.D., Henry Ford Hospital Department of Dermatology

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start

July 1, 2009

Primary Completion (ANTICIPATED)

July 1, 2010

Study Completion (ANTICIPATED)

July 1, 2010

Study Registration Dates

First Submitted

May 12, 2010

First Submitted That Met QC Criteria

May 12, 2010

First Posted (ESTIMATE)

May 14, 2010

Study Record Updates

Last Update Posted (ESTIMATE)

May 14, 2010

Last Update Submitted That Met QC Criteria

May 12, 2010

Last Verified

May 1, 2010

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • IRB #5672

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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