International Rare Histiocytic Disorders Registry (IRHDR)

Summary

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.

Eligibility

Inclusion Criteria:

1. Any age at diagnosis.
2. Diagnosis of a rare histiocytic disorder, established before or after the opening of the registry.
3. Cases diagnosed from January - 01- 1995 until the present time and prospectively.
4. Signed informed consent by a patient, or parent/legal guardian.
5. Cognitively impaired patients can be included after consent by legal guardian/parent.
6. Deceased patients can be included if they are contacted at least 6 months after the death of their child and not on their child's birthday or anniversary of death.

Exclusion Criteria:

1. Informed consent has not been signed.
2. Diagnosis other than RHD.
3. Cases diagnosed before the year 1995.

Conditions11

Locations6 sites

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