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Histiocytic and Lymphocitic Diseases working group

Composition

Chair

Dr. R. Mous (Hematologist, UMCU, Utrecht)

Vice-chair

Dr. S.H. Tonino (Hematologist, Amsterdam UMC, Amsterdam)

Secretary

Dr. F.J.S.H. Woei-A-Jin (Hematologist and Medical Oncologist, UH Leuven, Leuven)

Other

Dr. J. A.M. van Laar (Clinical Immunology, Erasmus MC,  Rotterdam)

Key objectives of working group

The key objectives of this working group are:

  • Improve health care for patients with rare hematological diseases from histiocytic and lymphocytic origin:
    • Langerhans Cell Histiocytosis (LCH)
    • Non-Langerhans Cell Histiocytosis (eg. Erdheim Chester Disease, Rosai Dorfman Disease)
    • Hemophagocytic LymphoHistiocytosis (HLH)
    • Castleman’s Disease (CD)
  • To uniform treatment by developing guidelines for diagnosis and treatment of rare histiocytic and lymphocytic diseases and organizing expert panel discussions for difficult cases
  • To design and conduct (inter)national clinical trials for patients with rare histiocytic and lymphocytic diseases
  • To secure access to drugs with proven efficacy, either via clinical trials or Drug Access Protocols (HEM-DAP)
  • To partner with international working groups (such as Histiocyte Society, European Consortium for Histiocytosis (ECHO), European Castleman Network)
  • To contribute to preclinical research initiatives by stimulating collection of biomaterials in disease-specific biobanks and supporting grant applications
  • To cooperate with patient advocacy organizations (Hematon, Histiocytose Nederland)
  • To collaborate with national cancer registries to conduct research on population-based data

Publication overview

  • Paul G. Kemps, F. J. Sherida H. Woei-A-Jin, Patrick Schöffski, Thomas Tousseyn, Isabelle Vanden Bempt, Friederike A. G. Meyer-Wentrup, Natasja Dors, Natasha K. A. van Eijkelenburg, Marijn A. Scheijde-Vermeulen, Ingrid M. Jazet, Maarten Limper, Margot Jak, Robert M. Verdijk, Marjolein L. Donker, Nick A. de Jonge, Carel J. M. van Noesel, Konnie M. Hebeda, Suzanne van Dorp, Sanne H. Tonino, Jan A. M. van Laar, Cor van den Bos, Astrid G. S. van Halteren, Erik Beckers, Merlijn van den Berg, Cor van den Bos, Godelieve de Bree, Emmeline Buddingh, Kristl Claeys, Paul van Daele, Petra De Haes, Astrid Demandt, Suzanne van Dorp, Liesbeth Hak, Astrid van Halteren, Tim van der Houwen, Margot Jak, Jeroen Kerstens, Arjan Kwakernaak, Jan van Laar, Helen Leavis, Roos Leguit, Arjan van de Loosdrecht, Linde Morsink, Rogier Mous, Max van Noesel, Rimke Oostvogels, Judith Potjewijd, Wouter Plattel, Wilfried Roeloffzen, Abraham Rutgers, Sanne Tonino, Thomas Tousseyn, Rob Verdijk, Joost Vermaat, Sherida Woei-A-Jin, Real-world experience with targeted therapy in patients with histiocytic neoplasms in the Netherlands and in Belgium, Blood Neoplasia, Volume 1, Issue 3, 2024
  • van Laar JAM, Buysse CMP, Vossen ACTM, Hjálmarsson B, van den Berg B, van Lom K, Deinum J. Epstein Barr viral load assessment in immunocompetent patients with fulminant infectious mononucleosis, Arch Intern Med. 2002;162(7):837-9.
  • van Laar JA, Buysse CM, Vossen AC, van den Berg B, van Lom K, Deinum J, Sonneveld P, van Hagen PM. Epstein-Barr virus geassocieerde hemofagocytose. Net J Hematol 2006; 3 (5): 193-199.
  • 'T Hoen, M., Van Laar, J.A.M., Thio, H.B. Multicentric reticulohistiocytosis [Multicentrische reticulohistiocytose]. Nederlands Tijdschrift voor Dermatologie en Venereologie 2006;16, (1):41-42
  • Chellapandian D, Das R, Zelley K, Wiener SJ, Zhao H, Teachey DT, Nichols KE; EBV-HLH Rituximab Study Group. Treatment of Epstein Barr virus-induced haemophagocytic lymphohistiocytosis with rituximab-containing chemo-immunotherapeutic regimens Br J Haematol. 2013;162:376-82. doi: 10.1111/bjh.12386. Epub 2013 May 21
  • Rokx C, Rijnders BJ, van Laar JA. Treatment of multicentric Castleman’s disease in HIV-1 infected and uninfected patients: a systematic review. Neth J Med. 2015;73:202-10
  • Zondag TC, Rokx C, van Lom K, van den Berg AR, Sonneveld P, Dik WA, van Doornum GJ, Lam KH, van Laar JA. Cytokine and viral load kinetics in human herpesvirus 8-associated multicentric Castleman's disease complicated by hemophagocytic lymphohistiocytosis. Int J Hematol. 2016;103:469-72
  • van Halteren AGS, van Laar JAM, van den Bos C. Langerhanscelhistiocytose: een vanuit klinisch en biologisch oogpunt intrigerende myeloïde aandoening Langerhans cell histiocytosis: a clinically and biologically intriguing myeloid disorder Net J Hematol 2016;13:174-81
  • Rokx C, van Laar JA, Rijnders BJ. Suggested relationship between Hemophagocytic Lymphohistiocytosis and Bartonella Henselae. Clin Infect Dis. 2016;63:427-8. doi: 10.1093/cid/ciw301. Epub 2016 May 8.
  • Detiger SE, Karim AF, van Laar JAM, Paridaens D, Verdijk RM. The histological absence of IgG4 positive plasma cells in juvenile xanthogranuloma; comments on 'Systemic juvenile xanthogranuloma: a case report and brief review'. Clin Exp Dermatol. 2018 Sep 21. doi: 10.1111/ced.13745. [Epub ahead of print]
  • La Rosée P, Horne A, Hines M, von Bahr Greenwood T, Machowicz R, Berliner N, Birndt S, Gil-Herrera J, Girschikofsky M, Jordan MB, Kumar A, van Laar JA, Lachmann G, Nichols KE, Ramanan AV, Wang Y, Wang Z, Janka G, Henter JI. Recommendations for the management of hemophagocytic lymphohistiocytosis in adults. Blood. 2019 Apr 16. pii: blood.2018894618. doi: 10.1182/blood.2018894618.
  • Kemps PG, Zondag TC, Steenwijk EC, Andriessen Q, Borst J, Vloemans S, Roelen DL, Voortman LM, Verdijk RM, van Noesel CJM, Cleven AHG, Hawkins C, Lang V, de Ru AH, Janssen GMC, Haasnoot GW, Franken KLMC, van Eijk R, Solleveld-Westerink N, van Wezel T, Egeler RM, Beishuizen A, van Laar JAM, Abla O, van den Bos C, van Veelen PA, van Halteren AGS. Apparent Lack of BRAF V600E Derived HLA Class I Presented Neoantigens Hampers Neoplastic Cell Targeting by CD8+ T Cells in Langerhans Cell Histiocytosis. Front Immunol. 2020;10:3045. doi: 10.3389/fimmu.2019.03045. eCollection 2019.
  • Kemps PG, Buijs J, Verdijk RM, Ledeboer QCP, Baatenburg de Jong RJ, van Laar JAM. Persistent Laryngeal Swelling Caused by Primary Intralymphatic Histiocytosis. JAMA Otolaryngol Head Neck Surg. 2020 May 21. doi: 10.1001/jamaoto.2020.0849.
  • Jongbloed EM, Hermans MAW, Wabbijn M, van Kampen JJA, van Laar JAM. HLH caused by an HSV-2 infection: a case report and review of the literature. Neth J Med. 2020 Sep;78(5):282-285.
  • Zhou Z, Zondag T, Hermans M, van Hagen PM, van Laar JAM. Hemophagocytic Lymphohistiocytosis in Activated PI3K Delta Syndrome: an Illustrative Case Report. J Clin Immunol. 2021 Jun 11:1-4. doi: 10.1007/s10875-021-01080-w
  • Hines MR, von Bahr Greenwood T, Beutel G, Beutel K, Hays JA, Horne A, Janka G, Jordan MB, van Laar JAM, Lachmann G, Lehmberg K, Machowicz R, Miettunen P, La Rosée P, Shakoory B, Zinter MS, Henter JI. Consensus-Based Guidelines for the Recognition, Diagnosis, and Management of Hemophagocytic Lymphohistiocytosis in Critically Ill Children and Adults. Crit Care Med, 2022 May 1;50(5):860-872. doi: 10.1097/CCM.0000000000005361. Epub 2021 Oct 5.
  • Kemps PG, Picarsic J, Durham BH, Hélias-Rodzewicz Z, Hiemcke-Jiwa LS, van den Bos C, van de Wetering MD, van Noesel CJM, van Laar JA, Verdijk RM, Flucke UE, Hogendoorn PCW, Woei-A-Jin FJSH, Sciot R, Beilken A, Feuerhake F, Ebinger M, Möhle R, Fend F, Bornemann A, Wiegering V, Ernestus K, Méry T, Gryniewicz-Kwiatkowska O, Dembowska-Baginska B, Evseev DA, Potapenko V, Baykov VV, Gaspari S, Rossi S, Gessi M, Tamburrini G, Héritier S, Donadieu J, Bonneau-Lagacherie J, Lamaison C, Farnault L, Fraitag S, Jullie ML, Haroche J, Collin M, Allotey J, Madni M, Turner K, Picton S, Barbaro PM, Poulin A, Tam IS, El Demellawy D, Empringham B, Whitlock JA, Raghunathan A, Swanson AA, Suchi M, Brandt JM, Yaseen NR, Weinstein JL, Eldem I, Sisk BA, Sridhar V, Atkinson MM, Massoth LR, Hornick JL, Alexandrescu S, Yeo KK, Petrova-Drus K, Peeke SZ, Munoz-Arcos L, Leino DG, Grier DD, Lorsbach R, Roy S, Kumar AR, Garg S, Tiwari N, Schafernak KT, Henry MM, van Halteren AGS, Abla O, Diamond EL, Emile JF. ALK+ histiocytosis: a new clinicopathologic spectrum highlighting neurologic involvement and responses to ALK inhibition. Blood. 2022 Jan 13;139(2):256-280.
  • Goyal G, Tazi A, Go RS, Rech KL, Picarsic J, Vassallo R, Young JR, Cox CW, van Laar JA, Hermiston ML, Cao XX, Makras P, Kaltsas G, Haroche J, Collin M, McClain KL, Diamond EL, Girschikofsky M. Expert consensus recommendations for the diagnosis and treatment of Langerhans cell histiocytosis in adults. Blood. 2022 Mar 10:blood.2021014343.
  • Zondag TCE, Torralba-Raga L, Van Laar JAM, Hermans MAW, Bouman A, Hollink IHIM, Van Hagen PM, Briggs DA, Hume AN, Bryceson YT. Novel RAB27A Variant Associated with Late-Onset Hemophagocytic Lymphohistiocytosis Alters Effector Protein Binding. J Clin Immunol. 2022 Jul 23. doi: 10.1007/s10875-022-01315-4.
  • Ghuijs W, Kemps PG, Capala ME, Verdijk RM, van Halteren AGS, van der Wal RJP, van Laar JAM. Aggressive unifocal bone Langerhans cell histiocytosis with soft tissue extension both responsive to radiotherapy: a case report. Radiat Oncol. 2022;17(1):137. doi: 10.1186/s13014-022-02108-0.
  • Kemps PG, Zondag TC, Arnardóttir HB, Solleveld-Westerink N, Borst J, Steenwijk EC, van Egmond D, Swennenhuis JF, Stelloo E, Trambusti I, Verdijk RM, van Noesel CJ, Cleven AH, Scheijde-Vermeulen M, Koudijs MJ, Krsková L, Hawkins C, Egeler RM, Brok J, von Bahr Greenwood T, Svojgr K, Beishuizen A, van Laar JA, Poetschger U, Hutter C, Sieni E, Minkov M, Abla O, van Wezel T, van den Bos C, van Halteren AGS. Clinicogenomic associations in childhood Langerhans cell histiocytosis: an international cohort study. Blood Adv. 2023 Feb 28;7(4):664-679. doi: 10.1182/bloodadvances.2022007947.
  • Detiger SE, Hötte GJ, Verdijk RM, de Keizer ROB, van Hagen PM, van Laar JAM, Paridaens D. Adult orbital xanthogranuloma: long-term follow-up of treated cases. Eye (Lond). 2023 Aug;37(12):2475-2481. doi: 10.1038/s41433-022-02357-z. Epub 2022 Dec 16.
  • Zondag TCE, Lika A, van Laar JAM. The role of etoposide in the treatment of adult patients with hemophagocytic lymphohistiocytosis. Exp Hematol Oncol. 2023 Jan 9;12(1):2.
  • Acosta-Medina AA, Kemps PG, Zondag TC, Abeykoon JP, Forma-Borst J, Steenwijk EC, Feijen EAM, Teepen JC, Bennani NN, Schram SM, Shah MV, Davidge-Pitts C, Koster MJ, Ryu J, Vassallo R, Tobin WO, Young JR, Dasari S, Rech KL, Ravindran A, Cleven AH, Verdijk RM, van Noesel CJM, Balgobind BV, Bouma GJ, Saeed P, Bramer JAM, de Groen RA, Vermaat JSP, van de Sande MAJ, Smit EF, Langerak AW, van Wezel T, Tonino SH, van den Bos C, van Laar JA, Go RS, Goyal G, van Halteren AGS. BRAF V600E is associated with higher incidence of second cancers in adults with Langerhans cell histiocytosis. Blood. 2023 Aug 18:blood.2023021212. doi: 10.1182/blood.2023021212.
  • Van Laar JAM. Expanding treatment options by selectively targeting the cytokine storm with ruxolitinib in primary hemophagocytic lymphohistiocytosis. Haematologica. 2023 Sep 7. doi: 10.3324/haematol.2023.283915.
  • Thesis “Klinische, immunologische en genetische aspecten van histiocytaire ziekten. Defense by Timo Zondag, 20-09-2023.
  • Thesis “ORBITAL INFLAMMATION: IgG4-related orbital disease, adult orbital xanthogranulomatous disease and Graves’ orbitopathy”. Defense by Sanne Detiger, due 2024.
  • Vanden Eycken C, Stals H, Garmyn M, Woei-A-Jin FJSH. Cutane presentatie van histiocytaire aandoeningen. Tijdschrift voor Geneeskunde. 2020-11-01. DOI: 10.47671/tvg.76.21.20.089.
  • Kemps PG, Picarsic J, Durham BH, Hélias-Rodzewicz Z, Hiemcke-Jiwa L, van den Bos C, van de Wetering MD, van Noesel CJM, van Laar JAM, Verdijk RM, Flucke UE, Hogendoorn PCW, Woei-A-Jin FJSH, Sciot R, Beilken A, Feuerhake F, Ebinger M, Möhle R, Fend F, Bornemann A, Wiegering V, Ernestus K, Méry T, Gryniewicz-Kwiatkowska O, Dembowska-Baginska B, Evseev DA, Potapenko V, Baykov VV, Gaspari S, Rossi S, Gessi M, Tamburrini G, Héritier S, Donadieu J, Bonneau-Lagacherie J, Lamaison C, Farnault L, Fraitag S, Jullié ML, Haroche J, Collin M, Allotey J, Madni M, Turner K, Picton S, Barbaro PM, Poulin A, Tam IS, El Demellawy D, Empringham B, Whitlock JA, Raghunathan A, Swanson AA, Suchi M, Brandt JM, Yaseen NR, Weinstein JL, Eldem I, Sisk BA, Sridhar V, Atkinson M, Massoth LR, Hornick JL, Alexandrescu S, Yeo KK, Petrova-Drus K, Peeke SZ, Muñoz-Arcos LS, Leino DG, Grier DD, Lorsbach R, Roy S, Kumar AR, Garg S, Tiwari N, Schafernak KT, Henry MM, van Halteren AGS, Abla O, Diamond EL, Emile JF. ALK-positive histiocytosis: a new clinicopathologic spectrum highlighting neurologic involvement and responses to ALK inhibition. Blood. 2022 Jan 13;139(2):256-280. doi: 10.1182/blood.2021013338.
  • Renier R, De Haes P, Bosisio F, Bempt IV, Woei-A-Jin FJSH. Vulvar Langerhans cell histiocytosis: Clinicopathologic characteristics, mutational profile, and treatment of 4 patients in a single-center cohort. JAAD Case Rep. 2023 Apr 23;36:78-81. doi: 10.1016/j.jdcr.2023.03.024

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