International Rare Histiocytic Disorders Registry (IRHDR)

Part of paid clinical trials in Birmingham, Alabama.

Sponsor
The Hospital for Sick Children
Study ID
NCT02285582
Status
Recruiting
Apply to this trial

Conditions

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

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Interventions

  • Registry study — OTHER
    No intervention.

Study Details

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 Dates

Start date
Oct 31, 2014
Status verified
Jun 2025
Primary completion
Sep 30, 2028
Completion
Sep 30, 2028

Study Design

Enrollment
400 participants (estimated)

Primary Outcome 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. [ Time Frame: Data will be analysed on average yearly, the registry will be ongoing for 10 years. ]

Central Contacts

Locations (6)

FacilityCityStateZIPSite coordinators
The University of Alabama at BirminghamBirminghamAlabama-
Gaurav Goyal, MD
[email protected]
Gaurav Goyal (PRINCIPAL_INVESTIGATOR)
Children's Hospital of Los AngelesLos AngelesCalifornia90027
Rima Jubran, MD
[email protected]
323-361-4624
Rima Jubran, MD (PRINCIPAL_INVESTIGATOR)
Valley Children's HospitalMaderaCalifornia93636
Faisal Razzaqi, MD
[email protected]
559-353-3000
Faizal Razzaqi, MD (PRINCIPAL_INVESTIGATOR)
Dana-Farber Cancer InstituteBostonMassachusetts02215
Barbara Degar, MD
[email protected]
Barbara Degar, MD (PRINCIPAL_INVESTIGATOR)
Memorial Sloan Kettering Cancer CenterNew YorkNew York10022
Eli Diamond, MD
[email protected]
212-610-0188
Eli Diamond, MD (PRINCIPAL_INVESTIGATOR)
University of Pittsburgh Medical CenterPittsburghPennsylvania15219
Steven Allen, MD
[email protected]
Steven Allen, MD (PRINCIPAL_INVESTIGATOR)

Find similar trials in Birmingham, AL

By research site
The University of Alabama at Birmingham· Birmingham, ALChildren's Hospital of Los Angeles· Los Angeles, CAValley Children's Hospital· Madera, CADana-Farber Cancer Institute· Boston, MAMemorial Sloan Kettering Cancer Center· New York, NYUniversity of Pittsburgh Medical Center· Pittsburgh, PA

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