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Histiocytic Disorder Follow-up Study

Who can join

As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.

Age
0 Years to 89 Years
Sex
All sexes
Healthy volunteers
Not accepted
Compensation
Not stated

Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

  • Procedures mentioned: Questionnaires

Only what the study's summary and detailed description on ClinicalTrials.gov say. Time periods may describe the whole study or a part of it — ask the study team what applies to you.

Show the study's own words
  • "The participants will complete a validated questionnaire capturing details of chronic health conditions, health related quality of life, cognitive/psychological function, and healthcare utilization."
Compensation
Not stated
  • Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
  • Participants are monitored closely by the research team throughout the study.
  • Some participants may receive access to an investigational treatment, which is still being studied.
  • Your participation helps researchers learn whether this approach could help future patients.

About this study

In plain language

This study looks at long-term health problems, mental health, ongoing pain, and use of health care in people with histiocytic disorders. These are diseases involving certain immune cells. It also looks at quality of life, deaths, and causes of death.

The purpose of the study is to describe the burden of chronic health conditions, psychological dysfunction, chronic pain, healthcare utilization, worse health-related quality of life, overall mortality, and cause-specific mortality among individuals with histiocytic disorders

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Who can join

  • Diagnosed at any age with one of these histiocytic disorders:
  • Langerhans cell histiocytosis.
  • Erdheim-Chester disease.
  • Rosai-Dorfman disease.
  • Xanthogranuloma.
  • Mixed histiocytosis.
  • Malignant histiocytosis, a cancer: histiocytic sarcoma, Langerhans cell sarcoma, or interdigitating cell sarcoma.
  • Hemophagocytic lymphohistiocytosis.

Who can't join

    Simplified for readability. The official criteria below are what the study team uses.

    Official eligibility criteria

    Inclusion Criteria: * diagnosis of histiocytic disorder at any age 1. Langerhans cell histiocytosis, 2. Erdheim-Chester disease, 3. Rosai-Dorfman disease, 4. Xanthogranuloma, 5. Mixed histiocytosis 6. Malignant histiocytosis (Histiocytic sarcoma, langerhans cell sarcoma, interdigitating cell sarcoma) 7. Hemophagocytic lymphohistiocytosis Exclusion Criteria: * None

    Study sites (1)

    AL