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Mast Cell Diseases in Practice and Research: Issues and Perspectives Raised by Patients and Their Recommendations to the Scientific Community and Beyond.

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Title: Mast Cell Diseases in Practice and Research: Issues and Perspectives Raised by Patients and Their Recommendations to the Scientific Community and Beyond.
Authors: Jennings SV; The Mast Cell Disease Society, Inc. (DBA The Mastocytosis Society, Inc.), Sterling, Mass. Electronic address: susan.jennings@tmsforacure.org., Finnerty CC; The Mast Cell Disease Society, Inc. (DBA The Mastocytosis Society, Inc.), Sterling, Mass; Department of Surgery, University of Texas Medical Branch, Galveston, Texas., Hobart JS; The UK Mastocytosis Support Group, London, United Kingdom., Martín-Martínez M; Spanish Association of Mastocytosis and Related Diseases (AEDM), Madrid, Spain; Medicinal Chemistry Institute (IQM-CSIC), Madrid, Spain., Sinclair KA; The Australasian Mastocytosis Society, Port Macquarie, New South Wales, Australia., Slee VM; The Mast Cell Disease Society, Inc. (DBA The Mastocytosis Society, Inc.), Sterling, Mass., Agopian J; French Association for Research Initiatives on Mast Cells and Mastocytosis (AFIRMM), Paris, France., Akin C; Division of Allergy and Clinical Immunology, Department of Medicine, University of Michigan, Ann Arbor, Mich., Álvarez-Twose I; Institute of Mastocytosis Studies of Castilla-La Mancha (CLMast) and CIBERONC, Virgen del Valle Hospital, Toledo, Spain; Spanish Network on Mastocytosis (REMA), Toledo and Salamanca, Spain., Bonadonna P; Allergy Unit, Verona University Hospital, Verona, Italy., Bowman AS; The Mast Cell Disease Society, Inc. (DBA The Mastocytosis Society, Inc.), Sterling, Mass; Department of Health and Human Performance, Middle Tennessee State University, Murfreesboro, Tenn., Brockow K; Department of Dermatology and Allergy Biederstein, Faculty of Medicine, Technical University of Munich, Munich, Germany., Bumbea H; European Center of Excellence in Mastocytosis, Hematological Rare Disease Center, Department of Hematology, Emergency University Hospital Bucharest, Bucharest, Romania., de Haro C; Mexican Association of Mastocytosis, AC, Mexico City, Mexico., Fok JS; Allergy and Clinical Immunology, Box Hill Hospital, Eastern Health, Box Hill, Victoria, Australia; Immunology and Allergy, Monash Medical Centre, Monash Health, Clayton, Victoria, Australia., Hartmann K; Division of Allergy, Department of Dermatology, University Hospital Basel and University of Basel, Basel, Switzerland., Hegmann N; Mastocytosis Self-Support Network, eV, Odenthal, Germany., Hermine O; Imagine Institute Université de Paris Descartes, Sorbonne, Institut National de la Santé et de la Recherche Médicale, Centre National de Référence des Mastocytoses (CEREMAST), Hôpital Necker, Assistance Publique Hôpitaux de Paris, Paris, France., Kalisiak M; Mastocytosis Society Poland, Warsaw, Poland., Katelaris CH; Department of Medicine, Immunology and Allergy Unit, Campbelltown Hospital, Campbelltown, New South Wales, Australia; Immunology and Allergy Unit, School of Medicine, Western Sydney University, Campbelltown, New South Wales, Australia., Kurz J; Mastocytosis Self-Support Network, eV, Odenthal, Germany., Marcis P; Italian Mastocytosis Association, Turin, Italy., Mayne D; The Australasian Mastocytosis Society, Port Macquarie, New South Wales, Australia., Mendoza D; Pediatric Allergy and Clinical Immunology, Instituto Nacional de Pediátria, Mexico City, Mexico., Moussy A; French Association for Research Initiatives on Mast Cells and Mastocytosis (AFIRMM), Paris, France., Mudretzkyj G; Austrian Mastocytosis Support Group, Vienna, Austria., Vaia NN; Mastocytosis Support Association Romania, Bucharest, Romania., Niedoszytko M; Allergology Department, Medical University of Gdansk, Gdansk, Poland., Elberink HO; Department of Allergology, Groningen Research Institute for Asthma and COPD (GRIAC), University Medical Center Groningen, University of Groningen, Groningen, The Netherlands., Orfao A; Spanish Network on Mastocytosis (REMA), Toledo and Salamanca, Spain; Servicio Central de Citometria, Centro de Investigacion del Cancer (IBMCC; CSIC/USAL), Instituto Biosanitario de Salamanca (IBSAL), CIBERONC and Department of Medicine, University of Salamanca, Salamanca, Spain., Radia DH; Guy's and St Thomas' NHS Foundation Trust, London, United Kingdom., Rosenmeier S; Austrian Mastocytosis Support Group, Vienna, Austria., Ribada E; Spanish Association of Mastocytosis and Related Diseases (AEDM), Madrid, Spain., Schinhofen W; Self-Support Association Mastocytosis eV, Toenisvorst, Germany., Schwaab J; Department of Hematology and Oncology, University Hospital Mannheim, Mannheim, Germany., Siebenhaar F; Institute of Allergology, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany; Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Allergology and Immunology, Berlin, Germany., Triggiani M; Division of Allergy and Clinical Immunology, University of Salerno, Salerno, Italy., Tripodo G; Italian Mastocytosis Association, Turin, Italy., Velazquez R; Mexican Association of Mastocytosis, AC, Mexico City, Mexico., Wielink Y; Mastocytosis Association Netherlands, Almere, The Netherlands., Wimazal F; Department of Obstetrics and Gynecology, Medical University of Vienna, Vienna, Austria., Yigit T; Self-Support Association Mastocytosis eV, Toenisvorst, Germany., Zubrinich C; Allergy and Clinical Immunology, Alfred Health, Melbourne, Victoria, Australia., Valent P; Department of Internal Medicine I, Division of Hematology and Hemostaseology, Medical University of Vienna, Vienna, Austria; Ludwig Boltzmann Institute for Hematology and Oncology, Medical University of Vienna, Vienna, Austria.
Source: The journal of allergy and clinical immunology. In practice [J Allergy Clin Immunol Pract] 2022 Aug; Vol. 10 (8), pp. 2039-2051. Date of Electronic Publication: 2022 Jun 28.
Publication Type: Journal Article; Research Support, Non-U.S. Gov't
Journal Info: Publisher: Elsevier Inc Country of Publication: United States NLM ID: 101597220 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 2213-2201 (Electronic) NLM ISO Abbreviation: J Allergy Clin Immunol Pract Subsets: MEDLINE
Database: MEDLINE Ultimate
FullText Text:
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PubType: Academic Journal
PubTypeId: academicJournal
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  Data: Mast Cell Diseases in Practice and Research: Issues and Perspectives Raised by Patients and Their Recommendations to the Scientific Community and Beyond.
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  Data: <searchLink fieldCode="AU" term="%22Jennings+SV%22">Jennings SV</searchLink>; The Mast Cell Disease Society, Inc. (DBA The Mastocytosis Society, Inc.), Sterling, Mass. Electronic address: susan.jennings@tmsforacure.org.<br /><searchLink fieldCode="AU" term="%22Finnerty+CC%22">Finnerty CC</searchLink>; The Mast Cell Disease Society, Inc. 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(DBA The Mastocytosis Society, Inc.), Sterling, Mass.<br /><searchLink fieldCode="AU" term="%22Agopian+J%22">Agopian J</searchLink>; French Association for Research Initiatives on Mast Cells and Mastocytosis (AFIRMM), Paris, France.<br /><searchLink fieldCode="AU" term="%22Akin+C%22">Akin C</searchLink>; Division of Allergy and Clinical Immunology, Department of Medicine, University of Michigan, Ann Arbor, Mich.<br /><searchLink fieldCode="AU" term="%22Álvarez-Twose+I%22">Álvarez-Twose I</searchLink>; Institute of Mastocytosis Studies of Castilla-La Mancha (CLMast) and CIBERONC, Virgen del Valle Hospital, Toledo, Spain; Spanish Network on Mastocytosis (REMA), Toledo and Salamanca, Spain.<br /><searchLink fieldCode="AU" term="%22Bonadonna+P%22">Bonadonna P</searchLink>; Allergy Unit, Verona University Hospital, Verona, Italy.<br /><searchLink fieldCode="AU" term="%22Bowman+AS%22">Bowman AS</searchLink>; The Mast Cell Disease Society, Inc. (DBA The Mastocytosis Society, Inc.), Sterling, Mass; Department of Health and Human Performance, Middle Tennessee State University, Murfreesboro, Tenn.<br /><searchLink fieldCode="AU" term="%22Brockow+K%22">Brockow K</searchLink>; Department of Dermatology and Allergy Biederstein, Faculty of Medicine, Technical University of Munich, Munich, Germany.<br /><searchLink fieldCode="AU" term="%22Bumbea+H%22">Bumbea H</searchLink>; European Center of Excellence in Mastocytosis, Hematological Rare Disease Center, Department of Hematology, Emergency University Hospital Bucharest, Bucharest, Romania.<br /><searchLink fieldCode="AU" term="%22de+Haro+C%22">de Haro C</searchLink>; Mexican Association of Mastocytosis, AC, Mexico City, Mexico.<br /><searchLink fieldCode="AU" term="%22Fok+JS%22">Fok JS</searchLink>; Allergy and Clinical Immunology, Box Hill Hospital, Eastern Health, Box Hill, Victoria, Australia; Immunology and Allergy, Monash Medical Centre, Monash Health, Clayton, Victoria, Australia.<br /><searchLink fieldCode="AU" term="%22Hartmann+K%22">Hartmann K</searchLink>; Division of Allergy, Department of Dermatology, University Hospital Basel and University of Basel, Basel, Switzerland.<br /><searchLink fieldCode="AU" term="%22Hegmann+N%22">Hegmann N</searchLink>; Mastocytosis Self-Support Network, eV, Odenthal, Germany.<br /><searchLink fieldCode="AU" term="%22Hermine+O%22">Hermine O</searchLink>; Imagine Institute Université de Paris Descartes, Sorbonne, Institut National de la Santé et de la Recherche Médicale, Centre National de Référence des Mastocytoses (CEREMAST), Hôpital Necker, Assistance Publique Hôpitaux de Paris, Paris, France.<br /><searchLink fieldCode="AU" term="%22Kalisiak+M%22">Kalisiak M</searchLink>; Mastocytosis Society Poland, Warsaw, Poland.<br /><searchLink fieldCode="AU" term="%22Katelaris+CH%22">Katelaris CH</searchLink>; Department of Medicine, Immunology and Allergy Unit, Campbelltown Hospital, Campbelltown, New South Wales, Australia; Immunology and Allergy Unit, School of Medicine, Western Sydney University, Campbelltown, New South Wales, Australia.<br /><searchLink fieldCode="AU" term="%22Kurz+J%22">Kurz J</searchLink>; Mastocytosis Self-Support Network, eV, Odenthal, Germany.<br /><searchLink fieldCode="AU" term="%22Marcis+P%22">Marcis P</searchLink>; Italian Mastocytosis Association, Turin, Italy.<br /><searchLink fieldCode="AU" term="%22Mayne+D%22">Mayne D</searchLink>; The Australasian Mastocytosis Society, Port Macquarie, New South Wales, Australia.<br /><searchLink fieldCode="AU" term="%22Mendoza+D%22">Mendoza D</searchLink>; Pediatric Allergy and Clinical Immunology, Instituto Nacional de Pediátria, Mexico City, Mexico.<br /><searchLink fieldCode="AU" term="%22Moussy+A%22">Moussy A</searchLink>; French Association for Research Initiatives on Mast Cells and Mastocytosis (AFIRMM), Paris, France.<br /><searchLink fieldCode="AU" term="%22Mudretzkyj+G%22">Mudretzkyj G</searchLink>; Austrian Mastocytosis Support Group, Vienna, Austria.<br /><searchLink fieldCode="AU" term="%22Vaia+NN%22">Vaia NN</searchLink>; Mastocytosis Support Association Romania, Bucharest, Romania.<br /><searchLink fieldCode="AU" term="%22Niedoszytko+M%22">Niedoszytko M</searchLink>; Allergology Department, Medical University of Gdansk, Gdansk, Poland.<br /><searchLink fieldCode="AU" term="%22Elberink+HO%22">Elberink HO</searchLink>; Department of Allergology, Groningen Research Institute for Asthma and COPD (GRIAC), University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.<br /><searchLink fieldCode="AU" term="%22Orfao+A%22">Orfao A</searchLink>; Spanish Network on Mastocytosis (REMA), Toledo and Salamanca, Spain; Servicio Central de Citometria, Centro de Investigacion del Cancer (IBMCC; CSIC/USAL), Instituto Biosanitario de Salamanca (IBSAL), CIBERONC and Department of Medicine, University of Salamanca, Salamanca, Spain.<br /><searchLink fieldCode="AU" term="%22Radia+DH%22">Radia DH</searchLink>; Guy's and St Thomas' NHS Foundation Trust, London, United Kingdom.<br /><searchLink fieldCode="AU" term="%22Rosenmeier+S%22">Rosenmeier S</searchLink>; Austrian Mastocytosis Support Group, Vienna, Austria.<br /><searchLink fieldCode="AU" term="%22Ribada+E%22">Ribada E</searchLink>; Spanish Association of Mastocytosis and Related Diseases (AEDM), Madrid, Spain.<br /><searchLink fieldCode="AU" term="%22Schinhofen+W%22">Schinhofen W</searchLink>; Self-Support Association Mastocytosis eV, Toenisvorst, Germany.<br /><searchLink fieldCode="AU" term="%22Schwaab+J%22">Schwaab J</searchLink>; Department of Hematology and Oncology, University Hospital Mannheim, Mannheim, Germany.<br /><searchLink fieldCode="AU" term="%22Siebenhaar+F%22">Siebenhaar F</searchLink>; Institute of Allergology, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany; Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Allergology and Immunology, Berlin, Germany.<br /><searchLink fieldCode="AU" term="%22Triggiani+M%22">Triggiani M</searchLink>; Division of Allergy and Clinical Immunology, University of Salerno, Salerno, Italy.<br /><searchLink fieldCode="AU" term="%22Tripodo+G%22">Tripodo G</searchLink>; Italian Mastocytosis Association, Turin, Italy.<br /><searchLink fieldCode="AU" term="%22Velazquez+R%22">Velazquez R</searchLink>; Mexican Association of Mastocytosis, AC, Mexico City, Mexico.<br /><searchLink fieldCode="AU" term="%22Wielink+Y%22">Wielink Y</searchLink>; Mastocytosis Association Netherlands, Almere, The Netherlands.<br /><searchLink fieldCode="AU" term="%22Wimazal+F%22">Wimazal F</searchLink>; Department of Obstetrics and Gynecology, Medical University of Vienna, Vienna, Austria.<br /><searchLink fieldCode="AU" term="%22Yigit+T%22">Yigit T</searchLink>; Self-Support Association Mastocytosis eV, Toenisvorst, Germany.<br /><searchLink fieldCode="AU" term="%22Zubrinich+C%22">Zubrinich C</searchLink>; Allergy and Clinical Immunology, Alfred Health, Melbourne, Victoria, Australia.<br /><searchLink fieldCode="AU" term="%22Valent+P%22">Valent P</searchLink>; Department of Internal Medicine I, Division of Hematology and Hemostaseology, Medical University of Vienna, Vienna, Austria; Ludwig Boltzmann Institute for Hematology and Oncology, Medical University of Vienna, Vienna, Austria.
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