{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,13]],"date-time":"2026-07-13T13:18:49Z","timestamp":1783948729352,"version":"3.55.0"},"reference-count":33,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2025,6,27]],"date-time":"2025-06-27T00:00:00Z","timestamp":1750982400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Clin Experimental Allergy"],"published-print":{"date-parts":[[2025,9]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>\n                      Systemic mastocytosis (SM) is a clonal mast cell disease primarily driven by the\n                      <jats:italic>KIT<\/jats:italic>\n                      D816V mutation and often characterised by unpredictable and debilitating symptoms. The Perceptions Realities and Insights on Systemic Mastocytosis (PRISM) survey queried patient and provider perceptions of SM in Europe.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>PRISM (funded by Blueprint Medicines Corporation) was composed of two independent surveys: a 119\u2010item patient survey on diagnosis, symptom burden, quality of life (QoL) and work impact; and a 103\u2010item healthcare provider (HCP) survey on approaches to SM diagnosis and management.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Data were evaluated from 540 patient respondents from Italy (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009136), France (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009112), the UK (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009101), Germany (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200983), Spain (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200964), Austria (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200926) and Switzerland (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200918). Patients reported a high symptom burden and reduced physical functioning and mental health due to SM, despite taking, on average, seven medications. A majority of patients reported that SM impacted their ability to work (58.9%). A total of 618 HCP responses were collected from Italy (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009203), Germany (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009123), the UK (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009110), Austria (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200963), France (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200956), Switzerland (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200944) and Spain (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200919). Various HCP types reported treating patients with SM; the majority were haematologists\/oncologists (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009167) and general practitioners (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009178). HCPs perceived that SM impacted their patients' QoL, with 54% reporting SM affected patients' lives \u2018quite a bit\u2019. The most frequently reported treatment goals were improving QoL and survival.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>PRISM is the largest international and first European survey to evaluate the burden of SM from both patient and HCP perspectives. Patients and HCPs perceived a high symptom burden, reduced QoL and reduced ability to work due to SM.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/cea.70101","type":"journal-article","created":{"date-parts":[[2025,6,27]],"date-time":"2025-06-27T23:05:27Z","timestamp":1751065527000},"page":"784-794","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Patient\u2010Reported Outcomes and Provider Perceptions of Systemic Mastocytosis: Results From the\n                    <scp>PRISM<\/scp>\n                    Study"],"prefix":"10.1111","volume":"55","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7318-2093","authenticated-orcid":false,"given":"Massimo","family":"Triggiani","sequence":"first","affiliation":[{"name":"Division of Allergy and Clinical Immunology University of Salerno  Salerno Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-1749-8702","authenticated-orcid":false,"given":"Jessica","family":"Hobart","sequence":"additional","affiliation":[{"name":"The UK Mastocytosis Support Group  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Iv\u00e1n","family":"Alvarez\u2010Twose","sequence":"additional","affiliation":[{"name":"Institute of Mastocytosis Studies of Castilla\u2010La Mancha (CLMast)  Toledo Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5275-6868","authenticated-orcid":false,"given":"Cristina Bulai","family":"Livideanu","sequence":"additional","affiliation":[{"name":"Department of Dermatology, French Reference Center for Mastocytosis (CEREMAST) Toulouse University Hospital  Toulouse France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7109-8031","authenticated-orcid":false,"given":"Franziska","family":"Ru\u00ebff","sequence":"additional","affiliation":[{"name":"Department of Dermatology and Allergy University Hospital Ludwig\u2010Maximilian University of Munich  Munich Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"St\u00e9phane","family":"Barete","sequence":"additional","affiliation":[{"name":"Unit of Dermatology Reference Centre for Mastocytosis (CEREMAST) AP\u2010HP Piti\u00e9\u2010Salp\u00eatri\u00e8re Hospital, Sorbonne Universit\u00e9  Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0476-1934","authenticated-orcid":false,"given":"Patrizia","family":"Bonadonna","sequence":"additional","affiliation":[{"name":"USD di Allergologia Azienda Ospedaliera Universitaria Integrata di Verona  Verona Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8245-4767","authenticated-orcid":false,"given":"Laurence","family":"Bouillet","sequence":"additional","affiliation":[{"name":"Clinical Immunology\/Internal Medicine Department, National Reference Center for Angioedema Grenoble University Hospital  Grenoble France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nauman M.","family":"Butt","sequence":"additional","affiliation":[{"name":"Clatterbridge Cancer Centre  Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mark","family":"Drummond","sequence":"additional","affiliation":[{"name":"Beatson Cancer Centre  Glasgow UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7242-9584","authenticated-orcid":false,"given":"Mar","family":"Guilarte","sequence":"additional","affiliation":[{"name":"Department of Allergy, Hospital Universitari Vall d'Hebron Vall d'Hebron Research Institute (VHIR)  Barcelona Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4595-8226","authenticated-orcid":false,"given":"Karin","family":"Hartmann","sequence":"additional","affiliation":[{"name":"Division of Allergy, Department of Dermatology University Hospital Basel and University of Basel  Basel Switzerland"},{"name":"Department of Clinical Research University Hospital Basel and University of Basel  Basel Switzerland"},{"name":"Department of Biomedicine University Hospital Basel and University of Basel  Basel Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Am\u00e9lie","family":"Beaux","sequence":"additional","affiliation":[{"name":"French Association of Patients With Mast Cell Diseases (ASSOMAST)  Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Celeste C.","family":"Finnerty","sequence":"additional","affiliation":[{"name":"The Mast Cell Disease Society Sterling, MA, USA (TMS) and University of Texas Medical Branch  Galveston Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicole","family":"Hegmann","sequence":"additional","affiliation":[{"name":"Mastocytosis Self\u2010Support Network, eV  Odenthal Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Patrizia","family":"Marcis","sequence":"additional","affiliation":[{"name":"Associazione Italiana Mastocitosi (ASIMAS) ODV  Bologne Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eugenia","family":"Ribada","sequence":"additional","affiliation":[{"name":"Spanish Association of Mastocytosis and Related Diseases (AEDM)  Madrid Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Waltraud","family":"Schinhofen","sequence":"additional","affiliation":[{"name":"Mastozytose e. 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H.Radia T.Tsewang I.Alvarez\u2010Twose et\u00a0al. \u201cUltra\u2010Sensitive KIT Testing Uncovers Previously Undetected KIT Mutations in Patients With Indolent Systemic Mastocytosis: Results From the Pioneer Trial \u201d American Society of Hematology 66th Annual Meeting; November 5 2024; San Diego CA USA.","DOI":"10.1182\/blood-2024-207798"},{"key":"e_1_2_11_29_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0002266"},{"key":"e_1_2_11_30_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2013-01-453183"},{"key":"e_1_2_11_31_1","doi-asserted-by":"publisher","DOI":"10.1038\/jid.2011.427"},{"key":"e_1_2_11_32_1","doi-asserted-by":"publisher","DOI":"10.2147\/OARRR.S282606"},{"key":"e_1_2_11_33_1","doi-asserted-by":"publisher","DOI":"10.3390\/diagnostics13132220"},{"key":"e_1_2_11_34_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaci.2022.04.020"}],"container-title":["Clinical &amp; Experimental Allergy"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/cea.70101","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,11,26]],"date-time":"2025-11-26T09:21:44Z","timestamp":1764148904000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/cea.70101"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,6,27]]},"references-count":33,"journal-issue":{"issue":"9","published-print":{"date-parts":[[2025,9]]}},"alternative-id":["10.1111\/cea.70101"],"URL":"https:\/\/doi.org\/10.1111\/cea.70101","archive":["Portico"],"relation":{},"ISSN":["0954-7894","1365-2222"],"issn-type":[{"value":"0954-7894","type":"print"},{"value":"1365-2222","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,6,27]]},"assertion":[{"value":"2025-04-25","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-06-17","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-06-27","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}