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NCT01417520 · ClinicalTrials.gov registry record
Clinical and Pathophysiological Investigations Into Erdheim Chester Disease
A clinical trial, sponsored by National Human Genome Research Institute (NHGRI).
- Completed
- Registry status
- 88
- Enrollment target
NCT01417520: Completed study, sponsored by National Human Genome Research Institute (NHGRI).
NCT01417520 is a clinical trial that has completed, run by National Human Genome Research Institute (NHGRI). The registered enrollment target is 88 participants. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT01417520 has completed, sponsored by National Human Genome Research Institute (NHGRI).
- COMPLETED
- Registry status
- 88 participants
- Enrollment target
Study Summary
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: * Participants will be screened with a physical exam and medical history. * Participants will have a study visit to provide samples for study, including blood, urine, and skin tissue samples. Participants will also have lung, heart, and muscle function tests; imaging studies of the brain, chest, and whole body; a treadmill running stress test; an eye exam; and other tests as needed by the study doctors. * Participants will be asked to return for a similar set of tests every 2 years, and to remain in contact for possible treatment options.
Primary Outcome
To comprehensively describe the natural history of ECD, including genetic and epidemiological aspects, its associated complications, and responses to various treatments.
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 88 participants |
| Start Date | 2011-08-01 |
| Est. Completion | 2019-07-24 |
What the finished NCT01417520 record still lists
NCT01417520 is an observational study that tracks outcomes without assigning an intervention. The registry caps enrollment at 88 participants, a relatively small participant target.
The record links to 0 conditions, and to 0 interventions.
NCT01417520 does not publish any study locations in the registry export this page uses.
Frequently Asked Questions
What is clinical trial NCT01417520 about?
NCT01417520 is a clinical study titled "Clinical and Pathophysiological Investigations Into Erdheim Chester Disease". 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 d...
What is the current status of trial NCT01417520?
This trial is currently completed. The enrollment target is 88 participants. The study started on 2011-08-01. Estimated completion is 2019-07-24.
Who is sponsoring clinical trial NCT01417520?
This trial is sponsored by National Human Genome Research Institute (NHGRI), which has 185 total clinical trials registered on ClinicalTrials.gov.
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