The Hospital for Sick Children
Oussama sister
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.
Rare Histiocytic Disorders (RHDs)
Juvenile Xanthogranuloma (JXG)
Reticulohistiocytoma (epithelioid Histiocytoma)
Xanthoma Disseminatum (XD)
Multicentric Reticulohistiocytosis (MRH)
Systemic Juvenile Xanthogranuloma
Erdheim-Chester Disease (ECD)
Multi-system Rosai-Dorfman Disease (RDD)
Registry study
Histiocytoses are rare diseases caused by an excess of cells called Histiocytes, which can infiltrate the skin, bones, lungs, liver, spleen and the central nervous system. These disorders can range from localized involvement that resolves spontaneously, to progressive disseminated forms that can be debilitating and sometimes life-threatening. The rare histiocytic disorders (RHD), or non-Langerhans cell disorders, are a diverse group of disorders defined by the accumulation of histiocytes that do not meet the criteria for Langerhans cell histiocytosis (LCH) or hemophagocytic lymphohistiocytosis (HLH). They include: Juvenile xanthogranuloma family, Erdheim-Chester disease, Multifocal Reticulohistiocytosis, Rosai-Dorfman disease and the Malignant Histiocytoses. Since they are so rare, there is limited understanding of their causes and treatments. Physicians, patients and parents of children with rare histiocytoses frequently consult members of the Histiocyte Society on the management of these disorders. Very often, no specific recommendation about treatment can be made due to the lack of prospective outcome data for these rare entities. The creation of an International Rare Histiocytic Disorders Registry (IRHDR) will facilitate a uniform diagnosis of the RHD's, as well as the collection and analysis of the clinical, epidemiological, treatment and survival data of patients with RHD. The registry will also provide expert pathology reviews and may lead to future therapeutic recommendations. Furthermore, the IRHDR can provide a framework for future clinical trials, thus, creating excellent research opportunities. Lastly, a de-identified link between clinical data and companion biology studies can potentially be accomplished in the future through the IRHDR. This may further help in understanding the etiology of these rare diseases, as well as identifying potential therapeutic targets.
| Study Type : | OBSERVATIONAL |
| Estimated Enrollment : | 300 participants |
| Official Title : | International Rare Histiocytic Disorders Registry (IRHDR) |
| Actual Study Start Date : | 2014-10 |
| Estimated Primary Completion Date : | 2028-09 |
| Estimated Study Completion Date : | 2028-09 |
Information not available for Arms and Intervention/treatment
| Ages Eligible for Study: | |
| Sexes Eligible for Study: | ALL |
| Accepts Healthy Volunteers: |
Want to participate in this study, select a site at your convenience, send yourself email to get contact details and prescreening steps.
RECRUITING
Children's Hospital of Los Angeles
Los Angeles, California, United States, 90027
RECRUITING
Valley Children's Hospital
Madera, California, United States, 93636
RECRUITING
Dana-Farber Cancer Institute
Boston, Massachusetts, United States, 02215
RECRUITING
Memorial Sloan Kettering Cancer Center
New York, New York, United States, 10022
RECRUITING
University of Pittsburgh Medical Center
Pittsburgh, Pennsylvania, United States, 15219
RECRUITING
Pediatria Garrahan National Hospital
Buenos Aires, Argentina,
COMPLETED
Elisabethinen Hospital Linz GmbH
Linz, Austria,
RECRUITING
The Hospital for Sick Children
Toronto, Ontario, Canada, M5G 1X8
ACTIVE NOT RECRUITING
Sainte-Justine university hospital center
Montréal, Quebec, Canada, H3T 1C5
RECRUITING
University Hospital Brno
Brno, Czechia,
RECRUITING
Rostock University Medical Hospital
Rostock, Germany,
RECRUITING
Meyer University Hospital-University
Florence, Italy,
RECRUITING
Princess Maxima Center
Utrecht, CS, Netherlands, 3584
RECRUITING
Children's Memorial Health Institute
Warsaw, Poland,
RECRUITING
Cruces University Hospital
Barakaldo, Spain,