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Registry for Patients With Erdheim-Chester Disease

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. Identifier: NCT03329274
Recruitment Status : Recruiting
First Posted : November 1, 2017
Last Update Posted : September 25, 2020
Information provided by (Responsible Party):
Memorial Sloan Kettering Cancer Center

Brief Summary:

The investigators want to understand more about what kinds of health problems are caused by Erdheim-Chester Disease (ECD), what happens as a result of different treatments for ECD, 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 ECD. To try to figure this out, doctors would like to collect information about people who have ECD 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.

Condition or disease
Erdheim-Chester Disease

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Study Type : Observational [Patient Registry]
Estimated Enrollment : 250 participants
Observational Model: Cohort
Time Perspective: Prospective
Target Follow-Up Duration: 3 Years
Official Title: Registry for Patients With Erdheim-Chester Disease
Actual Study Start Date : October 26, 2017
Estimated Primary Completion Date : October 2021
Estimated Study Completion Date : October 2021

Patients with Erdheim-Chester Disease

Primary Outcome Measures :
  1. Create registry for Erdheim-Chester Disease [ Time Frame: 3 years ]
    This ECD registry is motivated to capture comprehensive clinical information as well as patient-centered data about ECD patients.

Biospecimen Retention:   Samples Without DNA

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Patients with Erdheim-Chester Disease will be enrolled in this registry study.

Inclusion Criteria:

  • Diagnosis of Erdheim-Chester Disease by either 1) documented histopathologic establishing ECD or 2) documented histopathologic findings compatible with Erdheim-Chester disease 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 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 ECD-related health records sent to Registry review.

Exclusion Criteria:

  • Patients unwilling to sign consent.
  • Participants under the age of 18.

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT03329274

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Contact: Eli Diamond, MD 212-610-0243
Contact: Katherine Panageas, PhD 646-888-8237

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United States, New York
Memoral Sloan Kettering Cancer Center Recruiting
New York, New York, United States, 10065
Contact: Eli Diamond, PhD    212-610-0243      
Contact: Katherine Panageas, MD    646-888-8237      
Principal Investigator: Eli Diamond, MD         
Sponsors and Collaborators
Memorial Sloan Kettering Cancer Center
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Principal Investigator: Eli Diamond, MD Memorial Sloan Kettering Cancer Center
Additional Information:
Publications automatically indexed to this study by Identifier (NCT Number):
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Responsible Party: Memorial Sloan Kettering Cancer Center Identifier: NCT03329274    
Other Study ID Numbers: 17-516
First Posted: November 1, 2017    Key Record Dates
Last Update Posted: September 25, 2020
Last Verified: September 2020

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Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No
Keywords provided by Memorial Sloan Kettering Cancer Center:
Additional relevant MeSH terms:
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Erdheim-Chester Disease
Histiocytosis, Non-Langerhans-Cell
Lymphatic Diseases