Xeroderma Pigmentosum Patient Experiences

Henry Ford Health

Status: Unknown

Conditions: Xeroderma Pigmentosum

Treatments: Other: Survey Study

Study type: Observational

Funder types: Other

Identifiers

NCT01123694

IRB #5672

Details and patient eligibility

About

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.

Enrollment: 15 estimated patients

Sex: All

Volunteers: No Healthy Volunteers

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

Trial design

15 participants in 1 patient group

Xeroderma Pigmentosum patients

Description:

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

Treatment:

Other: Survey Study