Xeroderma Pigmentosum Patient Experiences

Xeroderma Pigmentosum: A Survey of Patient Experiences

Status

UNKNOWN

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT01123694

Enrollment

Registered

2010-05-14

Start date

2009-07-31

Completion date

2010-07-31

Last updated

2010-05-14

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Xeroderma Pigmentosum

Keywords

xeroderma pigmentosum, quality of life, DLQI, CDLQI

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.

Interventions

OTHERSurvey Study

Survey regarding quality of life

Study design

Observational model

CASE_ONLY

Time perspective

CROSS_SECTIONAL

Eligibility

Sex/Gender

ALL

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

Countries

United States

Contacts

Primary ContactDanielle M Hawkins, B.S.

hawki105@msu.edu248-535-8322

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026