- ICH GCP
- US Clinical Trials Registry
- Clinical Trial NCT03329274
Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses
The investigators want to understand more about what kinds of health problems are caused by histiocytosis, what happens as a result of different treatments, and how ECD affects people's lives, their feelings and their attitudes. The investigators also want to learn how these things change over time for people with these conditions. To try to figure this out, doctors would like to collect information about people who have histiocytosis and how they are treated for this disease.
Some participants will be asked to complete a brief interview over the telephone. Only a limited number of interviews will take place, and not everyone will be asked to participate in the interview. It is okay if the participant does not want to participate in the interview portion. If this is the case, the participant should let the study team member know when contacted.
Study Overview
Status
Conditions
Study Type
Enrollment (Estimated)
Contacts and Locations
Study Contact
- Name: Eli Diamond, MD
- Phone Number: 212-610-0243
- Email: diamone1@mskcc.org
Study Contact Backup
- Name: Katherine Panageas, PhD
- Phone Number: 646-888-8237
Study Locations
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-
New York
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New York, New York, United States, 10065
- Recruiting
- Memorial Sloan Kettering Cancer Center
-
Contact:
- Eli Diamond, PhD
- Phone Number: 212-610-0243
-
Contact:
- Katherine Panageas, MD
- Phone Number: 646-888-8237
-
Principal Investigator:
- Eli Diamond, MD
-
-
Participation Criteria
Eligibility Criteria
Ages Eligible for Study
Accepts Healthy Volunteers
Sampling Method
Study Population
Description
Inclusion Criteria:
- Diagnosis of Erdheim-Chester Disease, Langerhans cell histiocytosis, Rosai Dorfman disease, or another histiocytic neoplasm by either 1) documented histopathologic establishing ECD or HN or 2) documented histopathologic findings compatible with Erdheim-Chester disease or HN in the context of corroborating clinical and/or radiologic findings or 3) documented radiologic findings, in the absence of a biopsy having been performed or yielding evaluable tissue, that are felt by the Principal Investigator to unequivocally represent an ECD/HN diagnosis given the clinical context or 4) self reported with supporting documentation upon medical record collection.
- Proficiency in English, in the determination of the Investigator or by self report.
- Willing to have historical and future HN-related health records sent to Registry review.
Exclusion Criteria:
- Patients unwilling to sign consent.
- Participants under the age of 18.
Study Plan
How is the study designed?
Design Details
- Observational Models: Cohort
- Time Perspectives: Prospective
Cohorts and Interventions
Group / Cohort |
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Patients with Erdheim-Chester Disease and Other Histiocytoses
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What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
---|---|---|
Create registry for Erdheim-Chester Disease and Other Histiocytoses
Time Frame: 3 years
|
This ECD and Other Histiocytoses registry is motivated to capture comprehensive clinical information as well as patient-centered data about ECD and Other Histiocytoses patients.
|
3 years
|
Collaborators and Investigators
Investigators
- Principal Investigator: Eli Diamond, MD, Memorial Sloan Kettering Cancer Center
Publications and helpful links
Helpful Links
Study record dates
Study Major Dates
Study Start (Actual)
Primary Completion (Estimated)
Study Completion (Estimated)
Study Registration Dates
First Submitted
First Submitted That Met QC Criteria
First Posted (Actual)
Study Record Updates
Last Update Posted (Estimated)
Last Update Submitted That Met QC Criteria
Last Verified
More Information
Terms related to this study
Additional Relevant MeSH Terms
Other Study ID Numbers
- 17-516
Drug and device information, study documents
Studies a U.S. FDA-regulated drug product
Studies a U.S. FDA-regulated device product
This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.
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Memorial Sloan Kettering Cancer CenterCompletedLangerhans Cell Histiocytosis | Erdheim-Chester Disease | Histiocytic DisordersUnited States
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The Hospital for Sick ChildrenActive, not recruitingRare Histiocytic Disorders (RHDs) | Juvenile Xanthogranuloma (JXG) | Reticulohistiocytoma (Epithelioid Histiocytoma) | Xanthoma Disseminatum (XD) | Multicentric Reticulohistiocytosis (MRH) | Systemic Juvenile Xanthogranuloma | Erdheim-Chester Disease (ECD) | Multi-system Rosai-Dorfman Disease (RDD)Canada, United States, Poland, Argentina, Austria, Czechia, Germany, Italy, Russian Federation, Spain