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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients with Erdheim-Chester Disease and Other Histiocytoses |
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| Measure | Description | Time Frame |
|---|---|---|
| Create registry for Erdheim-Chester Disease and Other Histiocytoses | 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 |
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Inclusion Criteria:
Exclusion Criteria:
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Patients with Erdheim-Chester Disease and other HN will be enrolled in this registry study.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Eli Diamond, MD | Contact | 212-610-0243 | diamone1@mskcc.org | |
| Katherine Panageas, PhD | 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 |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 39626273 | Derived | Reiner AS, Alici Y, Correa DD, Bossert D, Sigler AM, Fournier D, Brewer K, Goyal G, Atkinson TM, Marathe P, Mao JJ, Panageas KS, Diamond EL. Anxiety and depression in patients with histiocytic neoplasms and their associated clinical features. Blood Adv. 2025 Mar 25;9(6):1376-1386. doi: 10.1182/bloodadvances.2024014850. | |
| 33057928 |
| Label | URL |
|---|---|
| Memorial Sloan Kettering Cancer Center | View source |
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| ID | Term |
|---|---|
| D031249 | Erdheim-Chester Disease |
| D006646 | Histiocytosis, Langerhans-Cell |
| D015618 | Histiocytosis, Sinus |
| ID | Term |
|---|---|
| D015616 | Histiocytosis, Non-Langerhans-Cell |
| D015614 | Histiocytosis |
| D008206 | Lymphatic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
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tissue
| Kirchner J, Hatzoglou V, Buthorn JB, Bossert D, Sigler AM, Reiner AS, Ulaner GA, Diamond EL. 18F-FDG PET/CT versus anatomic imaging for evaluating disease extent and clinical trial eligibility in Erdheim-Chester disease: results from 50 patients in a registry study. Eur J Nucl Med Mol Imaging. 2021 Apr;48(4):1154-1165. doi: 10.1007/s00259-020-05047-8. Epub 2020 Oct 15. |
| D017563 | Lung Diseases, Interstitial |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |