NCT01123694

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.

Trial Health

43
At Risk

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Trial has exceeded expected completion date
Enrollment
15

participants targeted

Target at below P25 for all trials

Timeline
Completed

Started Jul 2009

Shorter than P25 for all trials

Geographic Reach
1 country

1 active site

Status
unknown

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

July 1, 2009

Completed
11 months until next milestone

First Submitted

Initial submission to the registry

May 12, 2010

Completed
2 days until next milestone

First Posted

Study publicly available on registry

May 14, 2010

Completed
2 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

July 1, 2010

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

July 1, 2010

Completed
Last Updated

May 14, 2010

Status Verified

May 1, 2010

Enrollment Period

1 year

First QC Date

May 12, 2010

Last Update Submit

May 12, 2010

Conditions

Xeroderma Pigmentosum

Keywords

xeroderma pigmentosumquality of lifeDLQICDLQI

Study Arms (1)

Xeroderma Pigmentosum patients

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

Other: Survey Study

Interventions

Survey StudyOTHER

Survey regarding quality of life

Xeroderma Pigmentosum patients

Eligibility Criteria

Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Study population will be a convenience sample of XP patients from Camp Sundown, a camp for children with XP.

You may qualify if:

  • Confirmed diagnosis of xeroderma pigmentosum
  • Any age
  • Access to a public or private computer

You may not qualify if:

  • 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

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

Henry Ford Medical Center, New Center One

Detroit, Michigan, 48202, United States

RECRUITING

MeSH Terms

Conditions

Xeroderma Pigmentosum

Interventions

Longitudinal Studies

Condition Hierarchy (Ancestors)

Precancerous ConditionsNeoplasmsSkin AbnormalitiesCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesSkin Diseases, GeneticGenetic Diseases, InbornPhotosensitivity DisordersSkin DiseasesSkin and Connective Tissue DiseasesPigmentation DisordersDNA Repair-Deficiency DisordersMetabolic DiseasesNutritional and Metabolic Diseases

Intervention Hierarchy (Ancestors)

Cohort StudiesEpidemiologic StudiesEpidemiologic Study CharacteristicsEpidemiologic MethodsInvestigative TechniquesHealth Care Evaluation MechanismsQuality of Health CareHealth Care Quality, Access, and EvaluationPublic HealthEnvironment and Public Health

Study Officials

  • Henry W Lim, M.D.

    Henry Ford Hospital Department of Dermatology

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Danielle M Hawkins, B.S.

CONTACT

248-535-8322hawki105@msu.edu

Study Design

Study Type
observational
Observational Model
CASE ONLY
Time Perspective
CROSS SECTIONAL
Sponsor Type
OTHER

Study Record Dates

First Submitted

May 12, 2010

First Posted

May 14, 2010

Study Start

July 1, 2009

Primary Completion

July 1, 2010

Study Completion

July 1, 2010

Last Updated

May 14, 2010

Record last verified: 2010-05

Locations

US(1)