Clinical trial · Observational
Xeroderma Pigmentosum Patient Experiences
Xeroderma Pigmentosum: A Survey of Patient Experiences
NCT01123694CI-TRIAL-00003444unknownClinicalTrials.gov clinicaltrialsProvenance
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
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
Conditions (1)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Xeroderma Pigmentosum | — | UNRESOLVED | — |
Interventions
Interventions (1)
| Intervention | Type | Mapped drug | Match |
|---|---|---|---|
| Survey Study | Other | — | UNRESOLVED |
Design
Arms and outcomes
Arms (1)
- label
- Xeroderma Pigmentosum patients
- description
- Xeroderma Pigmentosum patients who attend Camp Sundown, a camp for children with this condition.
- interventionNames
- Other: Survey Study
Primary outcomes (0)
[]Eligibility
Eligibility (as posted)
- Sex
- All
Show eligibility criteria text
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
References
Publications (0)
Data not yet available
No reference posted for this study.