Follow-up on health outcomes in patients with histiocytic disorders

Histiocytic Disorder Follow-up Study

Observational University of Alabama at Birmingham · NCT05915208

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.

Quick facts

Study typeObservational
Enrollment6000 (estimated)
Ages0 Years to 89 Years
SexAll
SponsorUniversity of Alabama at Birmingham Academic / other
Locations1 site (Birmingham, Alabama)
Trial IDNCT05915208 on ClinicalTrials.gov

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.

Who should consider this trial

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.

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

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 performed: 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.

Eligibility criteria

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 this trial is running

Birmingham, Alabama

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions HistiocytosisLangerhans Cell HistiocytosisErdheim-Chester DiseaseRosai Dorfman DiseaseXanthogranulomaMalignant Histiocytosessurvivorshiplong-term
Last reviewed 2026-06-13 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.