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Clinical Trials in the Netherlands / NCT02285582
Recruiting Observational

International Rare Histiocytic Disorders Registry (IRHDR)

NCT02285582 · tracked via the Priya Life Science Netherlands tracker
Sponsor
The Hospital for Sick Children
Phase
Observational
Started
2014-10
Last updated
2025-06-24

Condition(s) studied

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

Investigational drug(s) / intervention(s)

Registry study

Registry study: No intervention.

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.

Eligibility

Sex
ALL
Min age
—
Max age
—
Healthy volunteers
No
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.

Primary outcome measure(s)

Trial sites (15)

FacilityCityRegionStatus
The University of Alabama at Birmingham Birmingham Alabama Recruiting
Children's Hospital of Los Angeles Los Angeles California Recruiting
Valley Children's Hospital Madera California Recruiting
Dana-Farber Cancer Institute Boston Massachusetts Recruiting
Memorial Sloan Kettering Cancer Center New York New York Recruiting
University of Pittsburgh Medical Center Pittsburgh Pennsylvania Recruiting
Hospital Nacional de Pediatria Garrahan Buenos Aires Argentina Recruiting
The Hospital for Sick Children Toronto Ontario Recruiting
Centre hospitalier universitaire Sainte-Justine Montreal Quebec Active Not Recruiting
University Hospital Brno Brno Czechia Recruiting
Rostock University Medical Hospital Rostock Germany Recruiting
Azienda Ospedaliero-Universitaria Meyer Florence Italy Recruiting
Prinses Maxima Center Utrecht CS Recruiting
Children's Memorial Health Institute Warsaw Poland Recruiting
Hospital Universitario Cruces Barakaldo Spain Recruiting

More The Hospital for Sick Children trials in the Netherlands

Slow Heart Registry of Fetal Immune-mediated High Degree Heart Block Recruiting
UCAN CAN-DU: Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Disease Recruiting
Official registry record

This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.

View NCT02285582 on ClinicalTrials.gov ↗ ← All trials in the Netherlands