International Rare Histiocytic Disorders Registry (IRHDR)
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.
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These resources are provided in partnership with the
Canadian Cancer Society