Histiocytic Disorder Follow-up Study
University of Alabama at Birmingham
Summary
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
Description
Background Over the last decade, major advances have occurred in histiocytic disorders with the discovery of MAPK-ERK pathway mutations leading to targeted therapeutics using BRAF- and MEK-inhibitors. However, there is a lack of large studies informing the burden of morbidity and mortality among people with histiocytosis. Institutional studies in pediatric LCH suggest that survivors suffer from long-term impairment of health related quality of life, cognitive dysfunction, pituitary dysfunction, and hearing difficulties in 20-50% cases. Studies from the investigative team and others have also…
Eligibility
- Age range
- 0–89 years
- Sex
- All
- Healthy volunteers
- No
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
Location
- University of Alabama at BirminghamBirmingham, Alabama