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.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 0 Years to 89 Years |
| Sex | All |
| Enrollment | 6000 (estimated) |
| Sponsor | University of Alabama at Birmingham Academic / other |
| Locations | 1 site (Birmingham, Alabama) |
| Status | Recruiting |
| Started | September 1, 2022 |
| Main results expected | July 2027 |
| Study ends | December 2028 |
| Registry record updated | June 12, 2026 |
| Trial ID | NCT05915208 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
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.