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 and 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 and is rated as an Elite provider by MediFind in the treatment of Erdheim-Chester Disease. His top areas of expertise are Waldenstrom Macroglobulinemia, Histiocytosis, Reticulohistiocytoma, Tissue Biopsy, and Bone Marrow Transplant. Dr. Abeykoon is currently accepting new patients.
J Haroche practices in Paris, France. Haroche and is rated as an Elite expert by MediFind in the treatment of Erdheim-Chester Disease. Their top areas of expertise are Erdheim-Chester Disease, Histiocytosis, Reticulohistiocytoma, Non-Langerhans-Cell Histiocytosis, and Tissue Biopsy.
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
Summary: This clinical trial is looking at a combination of drugs called vemurafenib and cobimetinib. Vemurafenib is approved as standard of care for adult patients with unresectable or metastatic melanoma. Cobimetinib is approved as standard of care in combination with vemurafenib for the treatment of adult patients with unresectable or metastatic melanoma. This means it has gone through clinical trials a...
Published Date: April 01, 2017
Published By: National Institutes of Health