Grant Awarded in 2009

Histiocyte Society International Rare Histiocytic Disorders Registry

Principal Investigator
Oussama Abla MD
The Hospital for Sick Children - Toronto, Ontario Canada

Date of Award
December 2009

Amount of Award
This study received additional funding from the Histiocytosis Association of Canada.

Layperson Summary
The Rare Histiocytic Disorders (RHD’s) are a group of diseases defined by the accumulation of histiocytes that do not meet the criteria for Langerhans cell Histiocytosis (LCH) or hemophagocytic lymphohistiocytosis (HLH). Most of the RHD’s are thought to arise from skin dendritic cells or macrophages. The most common RHD’s include Juvenile Xanthogranuloma (JXG), Erdheim-Chester disease (ECD), Rosai-Dorfman disease (RDD), Multicentric Reticulohistiocytosis (MRH) and the Malignant Histiocytoses. The causes of these rare disorders are unknown, as well as the exact incidence, best treatment strategy and outcome. There are no prospective studies available that can shed light on the optimal management approach for these rare entities.

One of the main objectives of the Rare Histiocytoses Committee of the Histiocyte Society is to create an international registry for the RHD’s, with the goal of improving our knowledge regarding the natural history, treatment and outcome of children and adults with rare histiocytoses. We would like to collect retrospective and prospective demographic and clinical information and to use the collected data to publish large reviews about the RHD’s. The registry may also help in developing treatment recommendations and future clinical trials. Our future hope is to use the registry as a useful resource for possible biology studies, which might help us understand the causes of these diseases and how best to treat them.

Patients will be enrolled by the study coordinator at the Hospital for Sick Children, Toronto, Canada by a telephonic consent. Only patients with rare histiocytoses will be included. Medical records will be requested by the study coordinator from the patient’s health care provider. Before enrollment in the registry, pathology specimens will have to be submitted and examined by the registry designated pathologist for confirmation of diagnosis. Patients’ privacy will be fully respected as they will be assigned unique code numbers.

The Histiocytosis Association of Canada is also supporting this study.

Progress Report


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