ClinicalTrials.gov record NCT03990428

Supportive Care Needs of Caregivers of People With Erdheim-Chester Disease and Other Histiocytic Diseases

Record copied from ClinicalTrials.gov: Oct 10, 2026AI summaries generated: Jul 27, 2026

A Study to Identify the Supportive Care Needs of Caregivers of Patients With Erdheim-Chester Disease and Other Histiocytic Diseases

About this page. This page shows the study's official ClinicalTrials.gov record ↗, with added help to make it easier to understand. We explain medical terms, highlight key details in plain language, and suggest questions you may want to ask the study team.

The record is periodically copied from ClinicalTrials.gov and may lag behind changes. AI summaries are checked by software, not a clinician.Read moreShow less

The official record is written by the study sponsor and published on ClinicalTrials.gov. It may not always reflect the latest changes. Before making any decisions, please confirm important information with the study team and your own healthcare team.

Where you see "AI summary", AI was used to create a plain-language explanation and software checked it against the source. It has not been reviewed by a clinician, so it may contain mistakes or leave out important details.

StatusRecruitingThe study is currently enrolling participants. Only the study team can say whether a particular person can join.

Study typeObservationalA study in which researchers do not assign participants to a treatment or other intervention. They observe or measure what happens, which may include study visits, tests, questionnaires or a review of medical records.

Healthy volunteersAcceptedPeople who do not have the condition being studied who are allowed to take part. Some studies include both people with the condition and healthy volunteers; others may enrol only healthy volunteers.

Age18 years old and older

SexAll

LocationUnited States

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 observational study aims to identify the supportive care needs of informal caregivers (family or friends) of people with Erdheim‑Chester disease and other histiocytic diseases. Participants complete online surveys at a single time point using the REDCap platform. The study plans about 120 caregivers of people with Erdheim‑Chester disease and 50 caregivers of people with other histiocytic disorders.

What it is studying. The study is measuring the supportive care needs reported by informal caregivers, including caregiver quality of life, mood, and experiences of meaning and purpose in caregiving. Supportive care needs are measured using the McGill Quality of Life in Life Threatening Illness - Family Carer Version (QLLTI-FC), with additional caregiver-reported survey items.

What the researchers hope to learn. To identify and describe the supportive care needs, quality-of-life, mood, and meaning/purpose experiences of informal caregivers of people with Erdheim‑Chester disease and other histiocytic diseases.

What this study is about

The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.

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?

Interventions being studied

Being studied in this trial does not mean the treatment or procedure is approved or available for this condition.

Behavioral: online surveys

Eligibility

The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.

Inclusion criteria

Self-identified informal caregiver (family member or friend who provides unpaid support) for a patient with Erdheim-Chester Disease (or LCH, RDD, or JXG for the exploratory aim).
Proficiency to complete study assessments in English, evaluated at the time of consent.
Age 18 or over.

Exclusion criteria

Participant unwilling to sign consent.
Participant unable to complete web-based assessments.

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.

Complete a single set of online surveys (via the REDCap platform) about supportive care needs, mood, and the caregiving experience. All data are self‑reported by the caregiver through the web-based questionnaire. No invasive procedures are described. Participation requires providing informed consent and the ability to complete web-based assessments in English.

How the study is structured. An observational, cohort study that collects caregiver-reported data by online surveys at a single time point. Surveys are completed by participants themselves through the REDCap electronic data capture platform.

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 Erdheim-Chester disease

Clinical trials11 trials listed for Erdheim-Chester diseaseEvery trial the registry lists for Erdheim-Chester disease, with recruitment status, phase and sites, updated from ClinicalTrials.gov.See all trials →Research updatesWhat changed in Erdheim-Chester disease researchLatest monthly update: September 2026. Includes: BRAF-targeted treatment. New research summarized each month in plain language, with links to every source paper.Read the latest update →

Important dates

Study start: Jun 14, 2019
Primary completion: June 2027 (estimated)
Study completion: June 2027 (estimated)
Target enrollment: 250 participants (estimated)
Last updated on registry: Jul 2, 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, DRPH 📞 646-888-8237

Participating sites (1)

Memorial Sloan Kettering Cancer CenterRecruiting
New York, New York, 10065 · United States
- Eli Diamond, MD · 212-610-0243
- Katherine Panageas, DrPH · 646-888-8237
- Eli Diamond, MD

Terms used on this page · explanations by MedicalUpdates.ai

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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