NCT01417520|Completed
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Sponsor study identifier
Secondary identifiers
observational
88
1 country
1
Study Start
August 1, 2011
Date type not reportedThis date has not been verified as actual or estimated.
Primary Completion
Not reported
Date not reportedStudy Completion
July 24, 2019
Date type not reportedThis date has not been verified as actual or estimated.
Background: \- Erdheim Chester Disease (ECD) is a very rare disease in which abnormal white blood cells start growing and affect the bones, kidneys, skin, and brain. ECD can cause severe lung disease, kidney failure, heart disease, and other complications that lead to death. Because ECD is a rare disease, found mostly in men over 40 years of age, there is no standard treatment for it. More information is needed to find out what genes can cause ECD and how best to treat it. Objectives: \- To collect study samples and medical information on people with Erdheim Chester Disease. Eligibility: \- Individuals 2 to 80 year of age who have been diagnosed with Erdheim Chester Disease. Design:
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
July 24, 2019
Date type not reportedThis date has not been verified as actual or estimated.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
August 1, 2011
Date type not reportedThis date has not been verified as actual or estimated.
August 13, 2011
Actual (reported)August 16, 2011
Actual (reported)July 24, 2019
Date type not reportedThis date has not been verified as actual or estimated.
To comprehensively describe the natural history of ECD, including genetic and epidemiological aspects, its associated complications, and responses to various treatments.
To comprehensively describe the natural history of ECD, including genetic and epidemiological aspects, its associated complications, and responses to various treatments.
1 day
To identify molecular markers important for diagnosis and treatment.
To identify molecular markers important for diagnosis and treatment.
1 day
ECD patients of any gender and ethnicity age 2-80 years are eligible to enroll in this protocol
National Institutes of Health Clinical Center, 9000 Rockville Pike
Bethesda, Maryland, 20892, United States
Bassou D, El Kharras A, Taoufik AT, En Nouali H, Elbaaj M, Benameur M, Darbi A. Cardiac Erdheim-Chester. Intern Med. 2009;48(1):83-4. doi: 10.2169/internalmedicine.48.1448. Epub 2009 Jan 1. No abstract available.
Aouba A, Georgin-Lavialle S, Pagnoux C, Martin Silva N, Renand A, Galateau-Salle F, Le Toquin S, Bensadoun H, Larousserie F, Silvera S, Provost N, Candon S, Seror R, de Menthon M, Hermine O, Guillevin L, Bienvenu B. Rationale and efficacy of interleukin-1 targeting in Erdheim-Chester disease. Blood. 2010 Nov 18;116(20):4070-6. doi: 10.1182/blood-2010-04-279240. Epub 2010 Aug 19.
Kevin J O'Brien, C.R.N.P.
National Human Genome Research Institute (NHGRI)
88 participants (actual enrollment reported by the registry).
First Submitted
August 13, 2011
First Posted
August 16, 2011
Study Start
August 1, 2011
Date type not reportedThis date has not been verified as actual or estimated.
Pilot Study of a Multi-Drug Regimen for Severe Pulmonary Fibrosis in Hermansky-Pudlak Syndrome
Contact the study team to confirm eligibility.
Barnes PJ, Foyle A, Hache KA, Langley RG, Burrell S, Juskevicius R. Erdheim-Chester disease of the breast: a case report and review of the literature. Breast J. 2005 Nov-Dec;11(6):462-7. doi: 10.1111/j.1075-122X.2005.00133.x.
Study Completion
July 24, 2019
Date type not reportedThis date has not been verified as actual or estimated.
Last Updated
July 26, 2019
Record last verified: 2019-07-24
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Source: ClinicalTrials.gov.
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