ClinicalTrials.gov record NCT03329274
Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses
Registry for Patients With Erdheim-Chester Disease and Other Histiocytoses
AI summaryWhat this study is about, in plain languageShow ▾Hide ▴
AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.
This registry collects medical records and patient-reported information from people with Erdheim-Chester disease, Langerhans cell histiocytosis, Rosai Dorfman disease, or other histiocytic neoplasms. It aims to describe health problems, treatment courses, quality of life, and how these change over time. Participants provide past and future health records and a limited number may be asked to do a brief optional phone interview.
What it is studying. The study seeks to learn what health problems occur in these histiocytoses, how people are treated, and how the diseases affect daily life and change over time.
What the researchers hope to learn. To build a comprehensive registry capturing clinical and patient-centered data about Erdheim-Chester disease and other histiocytoses, and to describe disease manifestations, treatment patterns, and changes over time.
What this study is about
The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.
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.
Eligibility
The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.
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 description and what participation involves
The registry record has no detailed description beyond the summary above.
AI summaryWhat participation may involve, in plain languageShow ▾Hide ▴
AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.
After giving informed consent, participants allow the study team to collect their past and future medical records about their histiocytosis and its treatment. A limited number of participants may be invited to do a brief telephone interview; that interview is optional and you may decline. The registry follows participants over time (target duration 3 years) to record health changes. The registry record does not list invasive procedures as required.
How the study is structured. A prospective, observational registry (cohort) with a target 3-year duration. Participants allow review of historical and future HN-related health records; no treatments are assigned. A limited number of participants may be invited to complete a short, optional telephone interview.
Questions you could ask
These questions are suggestions for a conversation with the study team or your own clinician, not advice.
- This is an observational study, so the study itself gives no treatment. What would taking part involve for me, and would it change my usual care?
- The listed sites are in United States. Is any of them reachable for me, and does the study help with travel?
- Which of the eligibility criteria would need to be checked with tests before I could join?
More on Langerhans cell histiocytosis
This trial is also listed on this site under Erdheim-Chester disease.
Important dates
- Study start
- Oct 26, 2017
- Primary completion
- October 2026 (estimated)
- Study completion
- October 2026 (estimated)
- Target enrollment
- 500 participants (estimated)
- Last updated on registry
- Jan 8, 2026
- Data verified
- Oct 10, 2026
Sponsor and research team
The lead sponsor funds and oversees the trial. A pharmaceutical or biotech company sponsor typically means the study is testing that company's drug or device; a hospital, university, or government agency usually indicates investigator-initiated or publicly funded research.
- Lead sponsor
- Memorial Sloan Kettering Cancer Center
Central study contact
If you're interested in participating, the central contact can answer general questions about the study — including eligibility requirements and how to find a recruiting site near you. Actual eligibility is determined by the site's medical team.
- Eli Diamond, MD 📞 212-610-0243 ✉ diamone1@mskcc.org
- Katherine Panageas, PhD 📞 646-888-8237
Participating sites (1)
- Memorial Sloan Kettering Cancer CenterRecruiting
New York, New York, 10065 · United States
- Eli Diamond, PhD · 212-610-0243
- Katherine Panageas, MD · 646-888-8237
- Eli Diamond, MD
Terms used on this page · explanations by MedicalUpdates.ai
- biopsy
- Removal of a small piece of tissue so it can be examined under a microscope. 'Biopsy-proven' or 'histologically confirmed' means the diagnosis was confirmed by examining tissue under a microscope.
- Principal Investigator
- The doctor or scientist responsible for running the study at a site or overall.
- Registry
- An organised collection of information about people with a particular condition, gathered over time for research. Joining a registry usually means sharing medical information, not receiving a treatment.
- Inclusion Criteria
- The conditions a person must meet to be considered for the study, for example a confirmed diagnosis, an age range or a test result.
- Exclusion Criteria
- The conditions that rule a person out even if they meet the inclusion criteria, for example other illnesses, certain medicines or pregnancy.
The study record on this page is reproduced from ClinicalTrials.gov, a database of the U.S. National Library of Medicine, where it was submitted by the study sponsor. MedicalUpdates.ai does not own this content, is not affiliated with or endorsed by ClinicalTrials.gov, NIH, or the U.S. Government, and does not verify the record. Plain-language notes, the glossary and the questions above are added by this site; text in the boxes marked "AI summary" was written by an AI model and may contain errors. Registry records change over time. Check the original record for the current version and discuss eligibility or participation with a qualified healthcare professional.
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