Xeroderma Pigmentosum Patient Experiences | NCT01123694

Studies
Xeroderma Pigmentosum Patient Experiences

NCT01123694

Sponsor

Henry Ford Health System

Status

Unknown status

Last Update Posted

May 14, 2010Estimated

Enrollment

15Estimated

Phase

Not provided

Conditions

Xeroderma Pigmentosum

Interventions

Survey Study

Countries

United States

Protocol Section

Identification Module Status Module Sponsor/Collaborators Module Oversight Module Description Module Conditions Module Design Module Arms/Interventions Module Outcomes Module Eligibility Module Contacts/Locations Module References Module IPD Sharing Statement Module

Results Section

Participant Flow Module Baseline Characteristics Module Outcome Measures Module Adverse Events Module More Info Module

Annotation Section

Annotation Module

Document Section

Large Document Module

Derived Section

Miscellaneous Info Module Condition Browse Module Intervention Browse Module

Protocol Section

Identification Module

NCT ID

Results Section

No data available

No data is available for this block.

Annotation Section

Annotation Module

Unposted Annotation

Unposted Responsible Party

Document Section

No data available

No data is available for this block.

Derived Section

Miscellaneous Info Module

Version Holder

Status Module

Record Verification Date

May 2010

Overall Recruitment Status or Expanded Access Status

Unknown status

Last Known Status

Recruiting

Delayed Posting

Not provided

Why Stopped

Not provided

Expanded Access Info

Start Date

Jul 2009

Primary Completion Date

Jul 2010Estimated

Completion Date

Jul 2010Estimated

First Submitted Date

May 12, 2010

First Submission Date that Met QC Criteria

May 12, 2010

First Posted Date

May 14, 2010Estimated

Results Waived

Not provided

Results First Submitted Date

Not provided

Results First Submitted that Met QC Criteria

Not provided

Results First Posted Date

Not provided

Certification/Extension (aka Delayed Results) First Submitted Date

Not provided

Certification/Extension First Submitted that Passed QC Review

Not provided

Certification/Extension First Posted Date

Not provided

Last Update Submitted Date

May 12, 2010

Last Update Posted Date

May 14, 2010Estimated

Oversight Module

Has Data Monitoring Committee (DMC)

Yes

Is FDA Regulated Drug

Not provided

Is FDA Regulated Device

Not provided

Is Unapproved Device

Not provided

Pediatric Postmarket Surveillance of a Device Product

Not provided

Product Exported from US

Not provided

FDAAA801 Violation

Not provided

Description Module

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.

Detailed Description

Not provided

Design Module

Study Type

Observational

Number of References to an Expanded Access Study

Not provided

Expanded Access Types

Not provided

Patient Registry

Not provided

Target Follow-Up Duration

Not provided

Phases

Not provided

Interventional Study Design

Allocation

Not provided

Intervention Model

Biospecimen

No data available

No data is available for this block.

Enrollment

15Estimated

Arms/Interventions Module

Arm Groups

Label	Type	Description	Intervention Names
Xeroderma Pigmentosum patients		Xeroderma Pigmentosum patients who attend Camp Sundown, a camp for children with this condition.	Other: Survey Study

Interventions

Name	Type	Description	Arm Group Labels	Other Names
Survey Study	Other	Survey regarding quality of life	Xeroderma Pigmentosum patients

Eligibility Module

Eligibility Criteria

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

Accepts Healthy Volunteers

Sex

All

Sex/Gender Based

Not provided

Sex/Gender Description

Not provided

Minimum Age

Not provided

Maximum Age

Not provided

Standard Ages

ChildAdultOlder Adult

Study Population

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

Sampling Method

Non-Probability Sample

Contacts/Locations Module

Central Contacts

Name	Role	Phone	Extension	Email
Danielle M Hawkins, B.S.	Contact	248-535-8322		hawki105@msu.edu

Overall Officials

Name	Affiliation	Role
Henry W Lim, M.D.	Henry Ford Hospital Department of Dermatology	Principal Investigator

Locations

Facility	Status	City	State	ZIP	Country	Contacts
Henry Ford Medical Center, New Center One	Recruiting	Detroit	Michigan	48202	United States

Unposted Events

Type	Date	Date Unknown
Release	Apr 3, 2013
Reset	May 29, 2013
Release	Aug 27, 2013
Reset	Oct 30, 2013
Release	Mar 8, 2017
Reset	Apr 18, 2017
Release	Feb 15, 2022
Reset	Apr 12, 2022
Release	Dec 19, 2022
Reset	Oct 10, 2023
Release	Oct 7, 2024
Reset	Nov 20, 2024

Submission Tracking

Estimated Results First Submitted Date

Apr 3, 2013

First MCP Posted Date

Not provided

Submission Infos

Release Date	Unrelease Date	Unrelease Date Unknown	Reset Date	MCP Release Number
Apr 3, 2013			May 29, 2013
Aug 27, 2013

Condition Browse Module

MeSH Terms

ID	Term
D014983	Xeroderma Pigmentosum

Ancestor Terms

ID	Term
D011230	Precancerous Conditions
D009369	Neoplasms
D012868	Skin Abnormalities
D000013	Congenital Abnormalities

Browse Leaves

Not provided

Browse Branches

Not provided

Intervention Browse Module

MeSH Terms

ID	Term
D008137	Longitudinal Studies

Ancestor Terms

ID	Term
D015331	Cohort Studies
D016021	Epidemiologic Studies
D016020	Epidemiologic Study Characteristics
D004812	Epidemiologic Methods

Browse Leaves

Not provided

Browse Branches

Not provided