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International Rare Histiocytic Disorders Registry (IRHDR)

Recruitingn/aAges any - anyAllThe Hospital for Sick Children
NCT02285582 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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 patie

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📋 Eligibility rules (as published)
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.
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What it tests

  • Registry study
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Where

15 sites
The University of Alabama at Birmingham
Birmingham, United States
Children's Hospital of Los Angeles
Los Angeles, United States
Valley Children's Hospital
Madera, United States
Dana-Farber Cancer Institute
Boston, United States
Memorial Sloan Kettering Cancer Center
New York, United States
University of Pittsburgh Medical Center
Pittsburgh, United States
Hospital Nacional de Pediatria Garrahan
Buenos Aires, Argentina
The Hospital for Sick Children
Toronto, Canada

…and 7 more on ClinicalTrials.gov.

🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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