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

Humans Mast Cell Activation Disorders Mast Cells Mastocytosis / diagnosis Quality of Life
Advocacy Anaphylaxis Mast cell activation syndromes Mast cell disorder/disease Mastocytosis Patient perceptions and experiences Quality of life Rare disease Triggers and symptoms Unmet needs

Journal

The journal of allergy and clinical immunology. In practice
ISSN: 2213-2201
Titre abrégé: J Allergy Clin Immunol Pract
Pays: United States
ID NLM: 101597220

Informations de publication

Date de publication:
08 2022
Historique:
received: 11 03 2022
revised: 08 06 2022
accepted: 20 06 2022
pubmed: 2 7 2022
medline: 17 8 2022
entrez: 1 7 2022
Statut: ppublish

Résumé

Since 2010, patients and physicians have collaborated to understand unmet needs of patients with mast cell diseases, incorporating mastocytosis and mast cell activation disorders, which include mast cell activation syndromes. This Open Innovation in Science project aims to expand understanding of the needs of patients affected by mast cell diseases, and encourage global communication among patient advocacy groups, physicians, researchers, industry, and government. A major aim is to support the scientific community's efforts to improve diagnosis, management, therapy, and patients' quality of life by addressing unmet needs. In collaboration with mast cell disease specialists, 13 patient advocacy groups from 12 countries and regions developed lists of top patient needs. A core team of leaders from patient advocacy groups collected and analyzed the data and proposed possible actions to address patient needs. Findings identified similarities and differences among participating countries in unmet needs between patients with mastocytosis and those with mast cell activation syndromes. Issues emphasized struggles relating to the nature and rarity of mast cell diseases, their impact on quality of life, the diagnostic process, access to appropriate care, more effective treatment, and the need for research. Solutions vary across countries because situations differ, in particular regarding the existence of and access to centers of excellence and reference centers. Multifaceted mast cell activation syndrome barriers necessitate innovative approaches to improve access to appropriate care. The outcomes of this project should greatly support scientists and clinicians in their efforts to improve diagnosis, management, and treatment of patients with mastocytosis and mast cell activation disorders.

Sections du résumé

BACKGROUND
Since 2010, patients and physicians have collaborated to understand unmet needs of patients with mast cell diseases, incorporating mastocytosis and mast cell activation disorders, which include mast cell activation syndromes.
OBJECTIVE
This Open Innovation in Science project aims to expand understanding of the needs of patients affected by mast cell diseases, and encourage global communication among patient advocacy groups, physicians, researchers, industry, and government. A major aim is to support the scientific community's efforts to improve diagnosis, management, therapy, and patients' quality of life by addressing unmet needs.
METHODS
In collaboration with mast cell disease specialists, 13 patient advocacy groups from 12 countries and regions developed lists of top patient needs. A core team of leaders from patient advocacy groups collected and analyzed the data and proposed possible actions to address patient needs.
RESULTS
Findings identified similarities and differences among participating countries in unmet needs between patients with mastocytosis and those with mast cell activation syndromes. Issues emphasized struggles relating to the nature and rarity of mast cell diseases, their impact on quality of life, the diagnostic process, access to appropriate care, more effective treatment, and the need for research.
CONCLUSIONS
Solutions vary across countries because situations differ, in particular regarding the existence of and access to centers of excellence and reference centers. Multifaceted mast cell activation syndrome barriers necessitate innovative approaches to improve access to appropriate care. The outcomes of this project should greatly support scientists and clinicians in their efforts to improve diagnosis, management, and treatment of patients with mastocytosis and mast cell activation disorders.

Identifiants

DOI: 10.1016/j.jaip.2022.06.018 PMID: 35777651
pubmed: 35777651
pii: S2213-2198(22)00640-7
doi: 10.1016/j.jaip.2022.06.018
pii:
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

2039-2051

Informations de copyright

Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.

Auteurs

Susan V Jennings (SV)

The Mast Cell Disease Society, Inc. (DBA The Mastocytosis Society, Inc.), Sterling, Mass. Electronic address: susan.jennings@tmsforacure.org.

Celeste C 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.

Jessica S Hobart (JS)

The UK Mastocytosis Support Group, London, United Kingdom.

Mercedes Martín-Martínez (M)

Spanish Association of Mastocytosis and Related Diseases (AEDM), Madrid, Spain; Medicinal Chemistry Institute (IQM-CSIC), Madrid, Spain.

Kristin A Sinclair (KA)

The Australasian Mastocytosis Society, Port Macquarie, New South Wales, Australia.

Valerie M Slee (VM)

The Mast Cell Disease Society, Inc. (DBA The Mastocytosis Society, Inc.), Sterling, Mass.

Julie Agopian (J)

French Association for Research Initiatives on Mast Cells and Mastocytosis (AFIRMM), Paris, France.

Cem Akin (C)

Division of Allergy and Clinical Immunology, Department of Medicine, University of Michigan, Ann Arbor, Mich.

Ivan 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.

Patrizia Bonadonna (P)

Allergy Unit, Verona University Hospital, Verona, Italy.

Angela S 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.

Knut Brockow (K)

Department of Dermatology and Allergy Biederstein, Faculty of Medicine, Technical University of Munich, Munich, Germany.

Horia Bumbea (H)

European Center of Excellence in Mastocytosis, Hematological Rare Disease Center, Department of Hematology, Emergency University Hospital Bucharest, Bucharest, Romania.

Claudia de Haro (C)

Mexican Association of Mastocytosis, AC, Mexico City, Mexico.

Jie Shen 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.

Karin Hartmann (K)

Division of Allergy, Department of Dermatology, University Hospital Basel and University of Basel, Basel, Switzerland.

Nicole Hegmann (N)

Mastocytosis Self-Support Network, eV, Odenthal, Germany.

Olivier 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.

Monika Kalisiak (M)

Mastocytosis Society Poland, Warsaw, Poland.

Constance H 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.

Jacqueline Kurz (J)

Mastocytosis Self-Support Network, eV, Odenthal, Germany.

Patrizia Marcis (P)

Italian Mastocytosis Association, Turin, Italy.

David Mayne (D)

The Australasian Mastocytosis Society, Port Macquarie, New South Wales, Australia.

David Mendoza (D)

Pediatric Allergy and Clinical Immunology, Instituto Nacional de Pediátria, Mexico City, Mexico.

Alain Moussy (A)

French Association for Research Initiatives on Mast Cells and Mastocytosis (AFIRMM), Paris, France.

Genija Mudretzkyj (G)

Austrian Mastocytosis Support Group, Vienna, Austria.

Nicoleta Nidelea Vaia (NN)

Mastocytosis Support Association Romania, Bucharest, Romania.

Marek Niedoszytko (M)

Allergology Department, Medical University of Gdansk, Gdansk, Poland.

Hanneke Oude Elberink (HO)

Department of Allergology, Groningen Research Institute for Asthma and COPD (GRIAC), University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.

Alberto 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.

Deepti H Radia (DH)

Guy's and St Thomas' NHS Foundation Trust, London, United Kingdom.

Sophie Rosenmeier (S)

Austrian Mastocytosis Support Group, Vienna, Austria.

Eugenia Ribada (E)

Spanish Association of Mastocytosis and Related Diseases (AEDM), Madrid, Spain.

Waltraud Schinhofen (W)

Self-Support Association Mastocytosis eV, Toenisvorst, Germany.

Juliana Schwaab (J)

Department of Hematology and Oncology, University Hospital Mannheim, Mannheim, Germany.

Frank 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.

Massimo Triggiani (M)

Division of Allergy and Clinical Immunology, University of Salerno, Salerno, Italy.

Giuseppe Tripodo (G)

Italian Mastocytosis Association, Turin, Italy.

Rocio Velazquez (R)

Mexican Association of Mastocytosis, AC, Mexico City, Mexico.

Yvon Wielink (Y)

Mastocytosis Association Netherlands, Almere, The Netherlands.

Friedrich Wimazal (F)

Department of Obstetrics and Gynecology, Medical University of Vienna, Vienna, Austria.

Timo Yigit (T)

Self-Support Association Mastocytosis eV, Toenisvorst, Germany.

Celia Zubrinich (C)

Allergy and Clinical Immunology, Alfred Health, Melbourne, Victoria, Australia.

Peter 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.

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Classifications MeSH

questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Mast Cell Diseases in Practice and Research:...
questionsmedicales.fr › Maladies du système immunitaire › Troubles de l'activation mastocytaire › Mast Cell Diseases in Practice and Research:...
questionsmedicales.fr › Systèmes sanguin et immunitaire › Système immunitaire › Mastocytes › Mast Cell Diseases in Practice and Research:...
questionsmedicales.fr › Maladies du système immunitaire › Troubles de l'activation mastocytaire › Mastocytose › Mast Cell Diseases in Practice and Research:...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Mesures épidémiologiques › Démographie › État de santé › Qualité de vie › Mast Cell Diseases in Practice and Research:...