Learn About Erdheim-Chester Disease
Erdheim-Chester disease is a rare type of slow-growing blood cancer called a histiocytic neoplasm, which results in overproduction of cells called histiocytes. Histiocytes normally function to destroy foreign substances and protect the body from infection. In Erdheim-Chester disease, the excess production of histiocytes (histiocytosis) leads to inflammation that can damage organs and tissues throughout the body, causing them to become thickened, dense, and scarred (fibrotic); this tissue damage may lead to organ failure.
More than half of people with Erdheim-Chester disease have a specific mutation in the BRAF gene. Mutations in other genes are also thought to be involved in this disorder.
Erdheim-Chester disease is a rare disorder; its exact prevalence is unknown. More than 500 affected individuals worldwide have been described in the medical literature. For unknown reasons, men are slightly more likely to develop the disease, accounting for about 60 percent of cases.
This condition is not inherited. It arises from a somatic mutation in histiocytes or their precursor cells during an individual's lifetime.
Memorial Neurology Group
Eli Diamond is a Neurologist in New York, New York. Dr. Diamond is rated as an Elite provider by MediFind in the treatment of Erdheim-Chester Disease. His top areas of expertise are Erdheim-Chester Disease, Glioblastoma, Astrocytoma, Brain Tumor, and Awake Craniotomy.
Mayo Clinic
Jithma Abeykoon is a Hematologist and an Oncologist in Rochester, Minnesota. Dr. Abeykoon is rated as an Elite provider by MediFind in the treatment of Erdheim-Chester Disease. His top areas of expertise are Waldenstrom Macroglobulinemia, Reticulohistiocytoma, Histiocytosis, Tissue Biopsy, and Bone Marrow Transplant. Dr. Abeykoon is currently accepting new patients.
J Haroche practices in Paris, France. Haroche is rated as an Elite expert by MediFind in the treatment of Erdheim-Chester Disease. Their top areas of expertise are Histiocytosis, Reticulohistiocytoma, Erdheim-Chester Disease, Non-Langerhans-Cell Histiocytosis, and Tissue Biopsy.
Summary: This phase I trial tests the safety, side effects, and best dose of Q702 in treating patients with hematologic malignancies. Q702 is in a class of medications called immunomodulatory agents. It works by helping the immune system kill cancer cells and by helping the bone marrow to produce normal blood cells. Giving Q702 may be safe, tolerable and/or effective in treating patients with hematologic m...
Summary: The investigators want to understand more about what kinds of health problems are caused by histiocytosis, what happens as a result of different treatments, and how ECD affects people's lives, their feelings and their attitudes. The investigators also want to learn how these things change over time for people with these conditions. To try to figure this out, doctors would like to collect informati...
Published Date: April 01, 2017
Published By: National Institutes of Health