Clinical trial · Observational
International Rare Histiocytic Disorders Registry (IRHDR)
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
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
Conditions (10)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| ALK-positive Histiocytosis | ALK-Positive Histiocytosis | ONTOLOGY_EXACT | 0.98 |
| Erdheim-Chester Disease (ECD) | Erdheim-Chester Disease | ONTOLOGY_EXACT | 0.85 |
| Indeterminate Dendritic Cell Histiocytosis | Indeterminate Dendritic Cell Tumor | ALIAS | 0.90 |
| Malignant Histiocytic Neoplasm (MHN) | — | UNRESOLVED | — |
| Mixed Histiocytosis (MXH) | — | UNRESOLVED | — |
| Multicentric Reticulohistiocytoma (MRH) | — | UNRESOLVED | — |
| Necrobiotic Xanthogranuloma (NX) | — | UNRESOLVED | — |
| Rare Histiocytic Disorders (RHDs) | — |
Interventions
Interventions (1)
| Intervention | Type | Mapped drug | Match |
|---|---|---|---|
| Registry study | Other | — | UNRESOLVED |
Design
Arms and outcomes
Arms (0)
[]Primary outcomes (1)
- measure
- Collecting data on disease presentation, treatments used and treatment outcomes over time for patients diagnosed with RHD to better understand the diseases and optimize the treatments.
- timeFrame
- Data will be analysed on average yearly, the registry will be ongoing for 10 years.
- description
- Collecting data on disease presentation, treatments used and treatment outcomes over time for patients diagnosed with RHD to better understand the diseases and optimize the treatments. Data will be analysed on average yearly, the registry will be ongoing for 10 years.
Secondary outcomes (1)
- measure
- Develop treatment guidelines for the RHD based on solid clinical trial data.
- timeFrame
- Data will be analysed on average yearly, the registry will be ongoing for 10 years.
- description
- Develop treatment guidelines for the RHD based on solid clinical trial data. Data will be analysed on average yearly, the registry will be ongoing for 10 years.
Eligibility
Eligibility (as posted)
- Sex
- All
Show eligibility criteria text
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.
References
Publications (1)
- BACKGROUNDWeitzman S, Jaffe R. Uncommon histiocytic disorders: the non-Langerhans cell histiocytoses. Pediatr Blood Cancer. 2005 Sep;45(3):256-64. doi: 10.1002/pbc.20246. PMID 15547923