This study is looking at the long-term health of people with histiocytic disorders, which are rare conditions where too many immune cells called histiocytes build up in the body. These include Langerhans Cell Histiocytosis (LCH), Erdheim-Chester Disease, Rosai-Dorfman Disease, and Xanthogranuloma. The study aims to understand how these conditions affect your overall health, including chronic health problems, mental well-being, pain, and how often you need medical care. Researchers will also look at how these conditions impact your quality of life and survival. They are interested in understanding if certain genetic changes, like those in the BRAF gene, or specific cell signals (ERK, MEK, RAF) play a role in these long-term effects. The study is open to individuals of all ages (0 to 89 years old) who have been diagnosed with a histiocytic disorder.

Study design

This is an observational study that plans to include about 6000 participants. It will look back at health information from people with histiocytic disorders.

What's involved

Participants will complete a questionnaire about their chronic health conditions, quality of life, mental health, and healthcare use.

Compensation

Not stated in the trial record.

Follow-up

The study will assess chronic health conditions from the time of diagnosis up to 200 months. It will also look at causes of death from 2 years preceding death.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.