International Rare Histiocytic Disorders Registry (IRHDR)

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorThe Hospital for Sick Children

About this trial

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 criteria

Qualifiers

Any age at diagnosis.

Diagnosis of a rare histiocytic disorder, established before or after the opening of the registry.

Cases diagnosed from January - 01- 1995 until the present time and prospectively.

Signed informed consent by a patient, or parent/legal guardian.

Disqualifiers

Informed consent has not been signed.

Diagnosis other than RHD.

Cases diagnosed before the year 1995.

Trial design

Treatments tested in this trial

  • Registry study

Treatment groups

No treatment groups listed

Sponsors and collaborators