Sinus histiocytosis with massive lymphadenopathy
MONDO:0006412A rare disorder of unknown etiology characterized by distention of the lymph node sinuses and sinusoidal histiocytic infiltration. The histiocytes characteristically contain ingested lymphocytes. Patients present with cervical lymphadenopathy, fever, leukocytosis, and hypergammaglobulinemia. It can affect extranodal sites, including skin, bones, and the respiratory tract. It usually regresses spontaneously.
Also known as: Destombes-RosaC/-Dorfman disease, Destombes-Rosaï-Dorfman disease, RDD, RosaC/-Dorfman-Destombes disease, Rosai-Dorfman Disease, Rosai-Dorfman disease, Rosaï-Dorfman-Destombes disease, SHML
16 clinical trials for this condition and its sub-types.
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Broader categories
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New pill Q702 aims to outsmart blood cancers in early trial
Disease control Recruiting nowThis early-stage trial is testing a new drug called Q702 in people with various blood cancers and related disorders that have not responded to standard treatments. Q702 is designed to help the immune system attack cancer cells and help the bone marrow make healthy blood cells. Th…
Phase: PHASE1 • Sponsor: Mayo Clinic • Aim: Disease control
Last updated Jun 27, 2026 07:54 UTC
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New drug combo aims to tame rare inflammatory disease
Disease control Recruiting nowThis phase 2 trial tests whether a combination of lenalidomide and dexamethasone can control Rosai-Dorfman disease, a rare condition causing swollen lymph nodes and tissue inflammation. About 40 adults who are newly diagnosed or have not responded to prior treatments will receive…
Phase: PHASE2 • Sponsor: Cancer Institute and Hospital, Chinese Academy of Medical Sciences • Aim: Disease control
Last updated Jun 27, 2026 07:51 UTC
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New pill shows promise for rare childhood diseases
Disease control Recruiting nowThis phase 2 trial is testing the drug mirdametinib in 40 people aged 2 and older with Langerhans cell histiocytosis or similar disorders. The goal is to see if this oral medication works better and has fewer side effects than current treatments. Participants take the drug twice …
Phase: PHASE2 • Sponsor: Children's Hospital Medical Center, Cincinnati • Aim: Disease control
Last updated Jun 26, 2026 18:37 UTC
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Targeted drug cobimetinib tested for rare immune cell cancers
Disease control Recruiting nowThis phase 2 study tests the drug cobimetinib in children and adults with Langerhans cell histiocytosis and related disorders that have come back or not responded to standard treatment. Cobimetinib blocks a growth signal that goes haywire in these diseases. The study will enroll …
Phase: PHASE2 • Sponsor: Carl Allen • Aim: Disease control
Last updated Jun 26, 2026 17:51 UTC
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500 patients needed to unlock secrets of rare histiocytic disorders
Knowledge-focused Recruiting nowThis study at Mayo Clinic will collect medical histories and blood, fluid, or tissue samples from 500 people with histiocytic disorders. Researchers will analyze these samples for molecular markers like BRAF V600E and PD-L1 to better understand the diseases. The goal is to gather…
Sponsor: Mayo Clinic • Aim: Knowledge-focused
Last updated Aug 06, 2026 00:00 UTC
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Caregiver survey aims to uncover hidden struggles in rare disease
Knowledge-focused Recruiting nowThis study surveys 250 informal caregivers (family or friends) of people with Erdheim-Chester disease and similar conditions. Participants complete online questionnaires about their supportive care needs, mood, and sense of purpose. The goal is to identify what caregivers need mo…
Sponsor: Memorial Sloan Kettering Cancer Center • Aim: Knowledge-focused
Last updated Jul 04, 2026 00:00 UTC
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Massive study tracks hidden toll of rare immune diseases
Knowledge-focused Recruiting nowThis study follows 6,000 people with histiocytic disorders (like Langerhans cell histiocytosis) to understand long-term health problems, pain, mental health, and causes of death. Researchers compare participants to healthy controls to identify factors that lead to new health issu…
Sponsor: University of Alabama at Birmingham • Aim: Knowledge-focused
Last updated Jun 27, 2026 13:05 UTC
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New PET tracer could spot Hard-to-See cancers
Knowledge-focused Recruiting nowThis early-phase study is testing a new imaging agent called [68Ga]-pentixafor to see how well it shows up on PET/CT scans in people with certain blood cancers (like multiple myeloma and non-Hodgkin lymphoma) and rare immune cell tumors. About 30 participants will get the agent a…
Phase: EARLY_PHASE1 • Sponsor: Memorial Sloan Kettering Cancer Center • Aim: Knowledge-focused
Last updated Jun 27, 2026 09:02 UTC
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New registry aims to unlock mysteries of rare histiocyte disorders
Knowledge-focused Recruiting nowThis study creates a registry for people with Erdheim-Chester disease and related histiocytoses. Researchers will collect medical information and patient experiences over time to better understand these rare conditions. Up to 500 participants will be enrolled, and some may be ask…
Sponsor: Memorial Sloan Kettering Cancer Center • Aim: Knowledge-focused
Last updated Jun 27, 2026 08:09 UTC