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This study is being done to answer the following question: What are the supportive care needs of informal caregivers of people with Erdheim-Chester disease and other histiocytic diseases?
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Caregivers of Patients | This is an observational study of informal caregivers (ICs) of patients with Erdheim-Chester Disease (ECD) and other histiocytic diseases. That will collect data cross-sectionally, at a single time point. Caregiver-reported data will be completed in the form of online surveys by the participants themselves using the Research Electronic Data Capture Platform [RedCAP] platform. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| online surveys | Behavioral | Survey data about supportive care needs, mood, and the experience of IC's finding meaning and purpose in the caregiving experience. |
|
| Measure | Description | Time Frame |
|---|---|---|
| Supportive Care Needs of informal caregivers | measured by the McGill Quality of Life in Life Threatening Illness - Family Carer Version (QLLTI-FC) | 3 years |
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Inclusion Criteria:
Exclusion Criteria:
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A target sample of 120 ICs of patients with Erdheim-Chester Disease will be enrolled in this study. Additionally, a target sample of 50 ICs of patients with other histiocytic disorders will be enrolled.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Eli Diamond, MD | Contact | 212-610-0243 | diamone1@mskcc.org | |
| Katherine Panageas, DRPH | Contact | 646-888-8237 |
| Name | Affiliation | Role |
|---|---|---|
| Eli Diamond, MD | Memorial Sloan Kettering Cancer Center | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Memorial Sloan Kettering Cancer Center | Recruiting | New York | New York | 10065 | United States |
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| Label | URL |
|---|---|
| Memorial Sloan Kettering Cancer Center | View source |
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Memorial Sloan Kettering Cancer Center supports the international committee of medical journal editors (ICMJE) and the ethical obligation of responsible sharing of data from clinical trials. The protocol summary, a statistical summary, and informed consent form will be made available on clinicaltrials.gov when required as a condition of Federal awards, other agreements supporting the research and/or as otherwise required. Requests for deidentified individual participant data can be made beginning 12 months after publication and for up to 36 months post publication. Deidentified individual participant data reported in the manuscript will be shared under the terms of a Data Use Agreement and may only be used for approved proposals. Requests may be made to: crdatashare@mskcc.org.
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| ID | Term |
|---|---|
| D031249 | Erdheim-Chester Disease |
| ID | Term |
|---|---|
| D015616 | Histiocytosis, Non-Langerhans-Cell |
| D015614 | Histiocytosis |
| D008206 | Lymphatic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
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