Xeroderma PigmentosumNCT01123694
Xeroderma Pigmentosum Patient Experiences
An observational study of Xeroderma Pigmentosum, run by Henry Ford Health System at 1 site in United States.
Trial 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. Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Xeroderma Pigmentosum
- What is being tested?
- Survey Study
- How many people
- 15 participants
- Where
- 1 siteUnited States
- Study dates
- Jul 2009to Jul 2010
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Study population: Study population will be a convenience sample of XP patients from Camp Sundown, a camp for children with XP.
Who may be able to join
- Confirmed diagnosis of xeroderma pigmentosum
- Any age
- Access to a public or private computer
Who cannot join
- 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 locations and contacts
1 site in 1 country.
United States1 site, 1 recruiting
- Recruiting
Henry Ford Medical Center, New Center One
Detroit, Michigan, 48202
Marsha Henderson, M.D., 313-916-6964
Melody Eide, MD, MPH
About this study
Official title: Xeroderma Pigmentosum: A Survey of Patient Experiences
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
- Xeroderma Pigmentosum
- Being tested
- Survey Study
- Keywords
- xeroderma pigmentosum, quality of life, DLQI, CDLQI
- Medical subject headings
- Xeroderma Pigmentosum
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Survey StudyOther
Survey regarding quality of life
| Study group | Role | What they receive |
|---|---|---|
| Xeroderma Pigmentosum patients | Xeroderma Pigmentosum patients who attend Camp Sundown, a camp for children with this condition. Receives: Other: Survey Study |
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted14 May 2010 (estimated)
- Study startJul 2009
- Primary completionJul 2010 (estimated)
- Study completionJul 2010 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Xeroderma PigmentosumStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Case only
- Time perspective
- Cross-sectional
- Enrolment
- 15 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Henry Ford Health System
- Sponsor type
- University, hospital or other
- Investigators
- Henry W Lim, M.D., Principal investigator, Henry Ford Hospital Department of Dermatology
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT01123694
- Sponsor's protocol ID
- IRB #5672
- Status last verified
- May 2010
- First submitted
- 12 May 2010
- Last updated
- 14 May 2010
- Results posted
- No
- Data monitoring committee
- Yes
Study at a glance
From the registry record, last updated by the sponsor on 14 May 2010. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Xeroderma Pigmentosum: A Survey of Patient Experiences
- ClinicalTrials.gov ID
- NCT01123694
- Acronym / sponsor ID
- IRB #5672
- Conditions
- Xeroderma Pigmentosum
- Keywords
- xeroderma pigmentosum, quality of life, DLQI, CDLQI
- Study type
- Observational
- Recruitment status
- Unknown status
- Enrolment
- 15 participants (estimated)
- Lead sponsor
- Henry Ford Health SystemUniversity, hospital or other
- Study start
- Jul 2009
- Primary completion
- Jul 2010 (estimated)
- Study completion
- Jul 2010 (estimated)
- First posted
- 14 May 2010 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Study design
- Observational model
- Case only
- Time perspective
- Cross-sectional
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| Xeroderma Pigmentosum patients | – | Other: Survey StudyXeroderma Pigmentosum patients who attend Camp Sundown, a camp for children with this condition. |
Who may qualify
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- Study population
- Study population will be a convenience sample of XP patients from Camp Sundown, a camp for children with XP.
Key inclusion criteria (3 listed)
- Confirmed diagnosis of xeroderma pigmentosum
- Any age
- Access to a public or private computer
Key exclusion criteria (3 listed)
- 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
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Survey StudySurvey regarding quality of life | Other | Xeroderma Pigmentosum patients |
Primary outcome
Not reported in the source record.
Results and safety
Results are not available in the source record.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 14 May 2010.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Henry W Lim, M.D. principal investigator
Henry Ford Hospital Department of Dermatology
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Xeroderma Pigmentosum, run by Henry Ford Health System at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 3 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: status not confirmed, as of the sponsor's last update on 14 May 2010. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
Results are not available in the source record.
How can a doctor refer a patient or contact the research team?
Contact Danielle M Hawkins, B.S. (248-535-8322, hawki105@msu.edu), or a site near the patient. AzTrials does not enrol participants or take referrals.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 14 May 2010.