Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Erdheim-Chester Disease. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Overview
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.
Primary outcome measures
- Create registry for Erdheim-Chester Disease and Other Histiocytoses [Time frame: 3 years]
Eligibility criteria
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.
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
United States · 1 center
- Memorial Sloan Kettering Cancer Center — New York
Publications
- 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. PMID 39626273
- 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. PMID 33057928
Identifiers
NCT: NCT03329274 · 17-516