Clinical trial Recruiting at 1 site Observational Ages 0 to 89

Follow-up on health outcomes in patients with histiocytic disorders

Official title: Histiocytic Disorder Follow-up Study

Run by University of Alabama at Birmingham · NCT05915208 · Data updated 2026-11-12

This study looks at the long-term health effects of histiocytic disorders on around 6000 patients to see how these conditions impact their overall well-being and quality of life.

More Langerhans Cell Histiocytosis trials

Quick facts

Study typeObservational
Ages0 Years to 89 Years
SexAll
Enrollment6000 (estimated)
SponsorUniversity of Alabama at Birmingham
Academic / other
Locations1 site (Birmingham, Alabama)
StatusRecruiting
StartedSeptember 1, 2022
Main results expectedJuly 2027
Study endsDecember 2028
Registry record updatedJune 12, 2026
Trial IDNCT05915208 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates for this study are individuals of any age diagnosed with a histiocytic disorder such as Langerhans cell histiocytosis or Erdheim-Chester disease.

Probably not a fit

Patients without a diagnosis of a histiocytic disorder will not benefit from this study.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to assess the long-term health impacts of histiocytic disorders, including chronic health conditions, psychological issues, and overall quality of life. By utilizing a retrospective cohort design, the study will gather data from approximately 6000 patients diagnosed with various histiocytic disorders through validated questionnaires. The focus is on understanding the burden of morbidity and mortality associated with these conditions, particularly in relation to healthcare utilization and the risk of secondary malignancies.

Why it matters

Potential benefit: If successful, this study could lead to improved follow-up guidelines and better management strategies for patients with histiocytic disorders.

How similar studies have gone: While there have been institutional studies on pediatric LCH, this study aims to fill a gap in understanding the broader implications of histiocytic disorders in both pediatric and adult populations.

Who can join: the full rules

Show full inclusion / exclusion 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

Where it's running

  • University of Alabama at Birmingham
    Birmingham, Alabama, United States
    Recruiting

Study contacts

  • Principal investigator: Gaurav Goyal, MD — University of Alabama at Birmingham
  • Study coordinator: Gaurav Goyal, MD
  • Email: histio@uabmc.edu
  • Phone: 1-866-438-1640

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.