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International Rare Histiocytic Disorders Registry (IRHDR)

NCT02285582 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 400

Last updated 2025-06-24

No results posted yet for this study

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.

Conditions

  • Rare Histiocytic Disorders (RHDs)
  • Erdheim-Chester Disease (ECD)
  • Rosai-Dorfman Disease (RDD)
  • Xanthogranuloma Family (XG)
  • Indeterminate Dendritic Cell Histiocytosis
  • Malignant Histiocytic Neoplasm (MHN)
  • ALK-positive Histiocytosis
  • Mixed Histiocytosis (MXH)
  • Multicentric Reticulohistiocytoma (MRH)
  • Necrobiotic Xanthogranuloma (NX)

Interventions

OTHER

Registry study

No intervention.

Sponsors & Collaborators

  • The Hospital for Sick Children

    lead OTHER

Principal Investigators

  • Oussama Abla, MD · The Hospital for Sick Children

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2014-10-31
Primary Completion
2028-09-30
Completion
2028-09-30

Countries

  • United States
  • Argentina
  • Canada
  • Czechia
  • Germany
  • Italy
  • Netherlands
  • Poland
  • Spain

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT02285582 on ClinicalTrials.gov