Actively Recruiting
Histiocytic Disorder Follow-up Study to Assess Long-Term Health and Mortality Outcomes
Led by University of Alabama at Birmingham · Updated on 2025-06-11
6000
Participants Needed
1
Research Sites
74 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are studying histiocytic disorders, a group of rare diseases including Langerhans Cell Histiocytosis and Erdheim-Chester Disease, to understand the long-term burden of chronic health issues, psychological problems, chronic pain, healthcare use, quality of life, and causes of death. Advances in targeted therapies have improved treatment, but there is limited large-scale information on long-term health impacts and survival outcomes for these patients. This observational study involves a retrospective review of patients from registries and institutions, including about 6000 individuals with various histiocytic disorders. Participants will complete validated questionnaires to provide detailed information about their chronic health conditions, cognitive and psychological functioning, quality of life, and healthcare usage. The study aims to identify risks of new health problems and mortality related to these diseases. Participants will be followed from diagnosis up to 200 months, with data collected on chronic health conditions graded by standardized criteria and mortality causes. Researchers will analyze health-related quality of life, cognitive effects, and healthcare needs. Findings will help create better follow-up guidelines and survivorship programs. The study includes individuals from birth up to 89 years old and will continue through December 2028.
CONDITIONS
Brief Title
Histiocytic Disorder Follow-up Study
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Diagnosis of a histiocytic disorder at any age
- Includes Langerhans cell histiocytosis
- Includes Erdheim-Chester disease
- Includes Rosai-Dorfman disease
- Includes Xanthogranuloma
- Includes mixed histiocytosis
- Includes malignant histiocytosis such as histiocytic sarcoma, langerhans cell sarcoma, interdigitating cell sarcoma
- Includes hemophagocytic lymphohistiocytosis
You will not qualify if you...
- None
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or remote)
Duration - Up to 200 months from diagnosis
Participants complete questionnaires capturing chronic health conditions, quality of life, cognitive and psychological function, and healthcare utilization to assess long-term health outcomes.
1 to 2 visits depending on questionnaire completion and follow-up assessments
Trial Site Locations
Total: 1 location
1
University of Alabama at Birmingham
Birmingham, Alabama, United States, 35233
Actively Recruiting
Research Team
G
Gaurav Goyal, MD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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