Ignite Creation Date:
2025-12-25 @ 1:38 AM
Ignite Modification Date:
2025-12-25 @ 11:53 PM
Study NCT ID:
NCT01123694
Status:
UNKNOWN
Last Update Posted:
2010-05-14
First Post:
2010-05-12
Is NOT Gene Therapy:
True
Has Adverse Events:
False
Brief Title:
Xeroderma Pigmentosum Patient Experiences
Sponsor:
Organization:
Raw JSON
{'hasResults': False, 'derivedSection': {'miscInfoModule': {'versionHolder': '2025-12-24', 'submissionTracking': {'submissionInfos': [{'resetDate': '2013-05-29', 'releaseDate': '2013-04-03'}, {'resetDate': '2013-10-30', 'releaseDate': '2013-08-27'}, {'resetDate': '2017-04-18', 'releaseDate': '2017-03-08'}, {'resetDate': '2022-04-12', 'releaseDate': '2022-02-15'}, {'resetDate': '2023-10-10', 'releaseDate': '2022-12-19'}, {'resetDate': '2024-11-20', 'releaseDate': '2024-10-07'}], 'estimatedResultsFirstSubmitDate': '2013-04-03'}}, 'conditionBrowseModule': {'meshes': [{'id': 'D014983', 'term': 'Xeroderma Pigmentosum'}], 'ancestors': [{'id': 'D011230', 'term': 'Precancerous Conditions'}, {'id': 'D009369', 'term': 'Neoplasms'}, {'id': 'D012868', 'term': 'Skin Abnormalities'}, {'id': 'D000013', 'term': 'Congenital Abnormalities'}, {'id': 'D009358', 'term': 'Congenital, Hereditary, and Neonatal Diseases and Abnormalities'}, {'id': 'D012873', 'term': 'Skin Diseases, Genetic'}, {'id': 'D030342', 'term': 'Genetic Diseases, Inborn'}, {'id': 'D010787', 'term': 'Photosensitivity Disorders'}, {'id': 'D012871', 'term': 'Skin Diseases'}, {'id': 'D017437', 'term': 'Skin and Connective Tissue Diseases'}, {'id': 'D010859', 'term': 'Pigmentation Disorders'}, {'id': 'D049914', 'term': 'DNA Repair-Deficiency Disorders'}, {'id': 'D008659', 'term': 'Metabolic Diseases'}, {'id': 'D009750', 'term': 'Nutritional and Metabolic Diseases'}]}, 'interventionBrowseModule': {'meshes': [{'id': 'D008137', 'term': 'Longitudinal Studies'}], 'ancestors': [{'id': 'D015331', 'term': 'Cohort Studies'}, {'id': 'D016021', 'term': 'Epidemiologic Studies'}, {'id': 'D016020', 'term': 'Epidemiologic Study Characteristics'}, {'id': 'D004812', 'term': 'Epidemiologic Methods'}, {'id': 'D008919', 'term': 'Investigative Techniques'}, {'id': 'D017531', 'term': 'Health Care Evaluation Mechanisms'}, {'id': 'D011787', 'term': 'Quality of Health Care'}, {'id': 'D017530', 'term': 'Health Care Quality, Access, and Evaluation'}, {'id': 'D011634', 'term': 'Public Health'}, {'id': 'D004778', 'term': 'Environment and Public Health'}]}}, 'protocolSection': {'designModule': {'studyType': 'OBSERVATIONAL', 'designInfo': {'timePerspective': 'CROSS_SECTIONAL', 'observationalModel': 'CASE_ONLY'}, 'enrollmentInfo': {'type': 'ESTIMATED', 'count': 15}}, 'statusModule': {'overallStatus': 'UNKNOWN', 'lastKnownStatus': 'RECRUITING', 'startDateStruct': {'date': '2009-07'}, 'expandedAccessInfo': {'hasExpandedAccess': False}, 'statusVerifiedDate': '2010-05', 'completionDateStruct': {'date': '2010-07', 'type': 'ESTIMATED'}, 'lastUpdateSubmitDate': '2010-05-12', 'studyFirstSubmitDate': '2010-05-12', 'studyFirstSubmitQcDate': '2010-05-12', 'lastUpdatePostDateStruct': {'date': '2010-05-14', 'type': 'ESTIMATED'}, 'studyFirstPostDateStruct': {'date': '2010-05-14', 'type': 'ESTIMATED'}, 'primaryCompletionDateStruct': {'date': '2010-07', 'type': 'ESTIMATED'}}, 'oversightModule': {'oversightHasDmc': True}, 'conditionsModule': {'keywords': ['xeroderma pigmentosum', 'quality of life', 'DLQI', 'CDLQI'], 'conditions': ['Xeroderma Pigmentosum']}, 'descriptionModule': {'briefSummary': '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.'}, 'eligibilityModule': {'sex': 'ALL', 'stdAges': ['CHILD', 'ADULT', 'OLDER_ADULT'], 'samplingMethod': 'NON_PROBABILITY_SAMPLE', 'studyPopulation': 'Study population will be a convenience sample of XP patients from Camp Sundown, a camp for children with XP.', 'healthyVolunteers': False, 'eligibilityCriteria': 'Inclusion Criteria:\n\n* Confirmed diagnosis of xeroderma pigmentosum\n* Any age\n* Access to a public or private computer\n\nExclusion Criteria:\n\n* Patients who do not have a confirmed diagnosis of XP\n* Patients under 18 who do not have a parent/guardian able to read or speak English\n* Patients who are unable to read or speak English'}, 'identificationModule': {'nctId': 'NCT01123694', 'briefTitle': 'Xeroderma Pigmentosum Patient Experiences', 'organization': {'class': 'OTHER', 'fullName': 'Henry Ford Health System'}, 'officialTitle': 'Xeroderma Pigmentosum: A Survey of Patient Experiences', 'orgStudyIdInfo': {'id': 'IRB #5672'}}, 'armsInterventionsModule': {'armGroups': [{'label': 'Xeroderma Pigmentosum patients', 'description': 'Xeroderma Pigmentosum patients who attend Camp Sundown, a camp for children with this condition.', 'interventionNames': ['Other: Survey Study']}], 'interventions': [{'name': 'Survey Study', 'type': 'OTHER', 'description': 'Survey regarding quality of life', 'armGroupLabels': ['Xeroderma Pigmentosum patients']}]}, 'contactsLocationsModule': {'locations': [{'zip': '48202', 'city': 'Detroit', 'state': 'Michigan', 'status': 'RECRUITING', 'country': 'United States', 'contacts': [{'name': 'Marsha Henderson, M.D.', 'role': 'CONTACT', 'phone': '313-916-6964'}, {'name': 'Melody Eide, MD, MPH', 'role': 'SUB_INVESTIGATOR'}, {'name': 'Henry W Lim, MD', 'role': 'PRINCIPAL_INVESTIGATOR'}, {'name': 'Marsha Henderson, MD', 'role': 'SUB_INVESTIGATOR'}, {'name': 'Danielle M Hawkins, BS', 'role': 'SUB_INVESTIGATOR'}], 'facility': 'Henry Ford Medical Center, New Center One', 'geoPoint': {'lat': 42.33143, 'lon': -83.04575}}], 'centralContacts': [{'name': 'Danielle M Hawkins, B.S.', 'role': 'CONTACT', 'email': 'hawki105@msu.edu', 'phone': '248-535-8322'}], 'overallOfficials': [{'name': 'Henry W Lim, M.D.', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'Henry Ford Hospital Department of Dermatology'}]}, 'sponsorCollaboratorsModule': {'leadSponsor': {'name': 'Henry Ford Health System', 'class': 'OTHER'}, 'responsibleParty': {'oldNameTitle': 'Henry Lim, MD', 'oldOrganization': 'Henry Ford Hospital Department of Dermatology'}}}, 'annotationSection': {'annotationModule': {'unpostedAnnotation': {'unpostedEvents': [{'date': '2013-04-03', 'type': 'RELEASE'}, {'date': '2013-05-29', 'type': 'RESET'}, {'date': '2013-08-27', 'type': 'RELEASE'}, {'date': '2013-10-30', 'type': 'RESET'}, {'date': '2017-03-08', 'type': 'RELEASE'}, {'date': '2017-04-18', 'type': 'RESET'}, {'date': '2022-02-15', 'type': 'RELEASE'}, {'date': '2022-04-12', 'type': 'RESET'}, {'date': '2022-12-19', 'type': 'RELEASE'}, {'date': '2023-10-10', 'type': 'RESET'}, {'date': '2024-10-07', 'type': 'RELEASE'}, {'date': '2024-11-20', 'type': 'RESET'}], 'unpostedResponsibleParty': 'Iltefat Hamzavi, M.D., Henry Ford Health System'}}}}