The rare histiocytic disorders (RHDs) are characterized by the infiltration of one or more organs by non-LCH histiocytes. They can range from localized disease that resolves spontaneously, to progressive disseminated forms that can be sometimes life-threatening. Since they are extremely rare, there is limited understanding of their causes and best treatment options. Physicians, patients and parents of children with RHDs frequently consult members of the Histiocyte Society regarding the best management of these disorders. Very often, no specific recommendation can be made due to the lack of prospective outcome data, or even large retrospective case series. The creation of an international rare histiocytic disorders registry (IRHDR) could facilitate a uniform diagnosis of the RHDs, as well as the collection and analysis of the clinical, epidemiological, treatment and survival data of patients with RHD. The registry may also lead to future therapeutic recommendations, provide a framework for future clinical trials and create excellent research opportunities.
Rare Histiocytic Disorders (RHDs), Juvenile Xanthogranuloma (JXG), Reticulohistiocytoma (epithelioid Histiocytoma), Xanthoma Disseminatum (XD), Multicentric Reticulohistiocytosis (MRH), Systemic Juvenile Xanthogranuloma, Erdheim-Chester Disease (ECD), Multi-system Rosai-Dorfman Disease (RDD)
The rare histiocytic disorders (RHDs) are characterized by the infiltration of one or more organs by non-LCH histiocytes. They can range from localized disease that resolves spontaneously, to progressive disseminated forms that can be sometimes life-threatening. Since they are extremely rare, there is limited understanding of their causes and best treatment options. Physicians, patients and parents of children with RHDs frequently consult members of the Histiocyte Society regarding the best management of these disorders. Very often, no specific recommendation can be made due to the lack of prospective outcome data, or even large retrospective case series. The creation of an international rare histiocytic disorders registry (IRHDR) could facilitate a uniform diagnosis of the RHDs, as well as the collection and analysis of the clinical, epidemiological, treatment and survival data of patients with RHD. The registry may also lead to future therapeutic recommendations, provide a framework for future clinical trials and create excellent research opportunities.
International Rare Histiocytic Disorders Registry (IRHDR)
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Children's Hospital of Los Angeles, Los Angeles, California, United States, 90027
Valley Children's Hospital, Madera, California, United States, 93636
Dana-Farber Cancer Institute, Boston, Massachusetts, United States, 02215
Memorial Sloan Kettering Cancer Center, New York, New York, United States, 10022
University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania, United States, 15219
Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.
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The Hospital for Sick Children,
Oussama Abla, MD, PRINCIPAL_INVESTIGATOR, The Hospital for Sick Children
2028-09