International Rare Histiocytic Disorders Registry (IRHDR)
The Hospital for Sick Children
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.
Description
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…
Eligibility
- Age range
- Not specified
- Sex
- All
- 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 ha…
Interventions
- OtherRegistry study
No intervention.
Locations (15)
- The University of Alabama at BirminghamBirmingham, Alabama
- Children's Hospital of Los AngelesLos Angeles, California
- Valley Children's HospitalMadera, California
- Dana-Farber Cancer InstituteBoston, Massachusetts
- Memorial Sloan Kettering Cancer CenterNew York, New York
- University of Pittsburgh Medical CenterPittsburgh, Pennsylvania