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Xeroderma Pigmentosum: A Survey of Patient Experiences


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Open (Enrolling)
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Xeroderma Pigmentosum

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Trial Information

Xeroderma Pigmentosum: A Survey of Patient Experiences


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

Type of Study:

Observational

Study Design:

Observational Model: Case-Only, Time Perspective: Cross-Sectional

Principal Investigator

Henry W Lim, M.D.

Investigator Role:

Principal Investigator

Investigator Affiliation:

Henry Ford Hospital Department of Dermatology

Authority:

United States: Institutional Review Board

Study ID:

IRB #5672

NCT ID:

NCT01123694

Start Date:

July 2009

Completion Date:

July 2010

Related Keywords:

  • Xeroderma Pigmentosum
  • xeroderma pigmentosum
  • quality of life
  • DLQI
  • CDLQI
  • Ichthyosis
  • Xeroderma Pigmentosum

Name

Location

Henry Ford Medical Center, New Center OneDetroit, Michigan  48202