International Rare Histiocytic Disorders Registry (IRHDR)

Recruiting now

Conditions studied: 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)

In brief

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.

Key facts

Study ID

NCT02285582

Run by

The Hospital for Sick Children

People needed

400

Starts

2014-10-01

Expected to finish

2028-09-01

Last updated by the study team

2025-06-24

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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.
• Cognitively impaired patients can be included after consent by legal guardian/parent.
• 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.

You may not qualify if…

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

Where it is running

• Hospital Universitario Cruces — Barakaldo, Spain (enrolling)
• Children's Hospital of Los Angeles — Los Angeles, California, United States (enrolling)
• Valley Children's Hospital — Madera, California, United States (enrolling)
• Dana-Farber Cancer Institute — Boston, Massachusetts, United States (enrolling)
• Memorial Sloan Kettering Cancer Center — New York, New York, United States (enrolling)
• University of Pittsburgh Medical Center — Pittsburgh, Pennsylvania, United States (enrolling)
• Hospital Nacional de Pediatria Garrahan — Buenos Aires, Argentina (enrolling)
• The Hospital for Sick Children — Toronto, Ontario, Canada (enrolling)
• The University of Alabama at Birmingham — Birmingham, Alabama, United States (enrolling)
• University Hospital Brno — Brno, Czechia (enrolling)
• Rostock University Medical Hospital — Rostock, Germany (enrolling)
• Azienda Ospedaliero-Universitaria Meyer — Florence, Italy (enrolling)
• Prinses Maxima Center — Utrecht, CS, Netherlands (enrolling)
• Children's Memorial Health Institute — Warsaw, Poland (enrolling)
• Centre hospitalier universitaire Sainte-Justine — Montreal, Quebec, Canada

Full record on ClinicalTrials.gov

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