{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,12]],"date-time":"2026-06-12T01:10:51Z","timestamp":1781226651698,"version":"3.54.1"},"reference-count":34,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2022,5,2]],"date-time":"2022-05-02T00:00:00Z","timestamp":1651449600000},"content-version":"vor","delay-in-days":1,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J Deutsche Derma Gesell"],"published-print":{"date-parts":[[2022,5]]},"abstract":"<jats:title>Summary<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Cutaneous T\u2010cell lymphomas (CTCLs) are rare forms of non\u2010Hodgkin\u2019s lymphoma of T\u2010cell origin that occur mainly in the skin. The most common form is mycosis fungoides (MF), but S\u00e9zary syndrome (SS), a more aggressive form of CTCL, is another relevant subgroup. Due to the rare nature of the disease, population\u2010based studies of the epidemiology and disease burden and insights into care delivery are limited.<\/jats:p><\/jats:sec><jats:sec><jats:title>Patients and methods<\/jats:title><jats:p>Based on an anonymized, age and sex\u2010adjusted routine dataset comprising approximately five million people with statutory health insurance, a retrospective, longitudinal healthcare research study was conducted over a six\u2010year period (2012\u20132017).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>In 55\u00a0% of patients with MF and SS, the initial diagnosis was documented in an outpatient setting; in 59\u00a0% of cases by a dermatologist. Immunophenotyping by flow cytometry is considered an important investigative tool for the detection and follow\u2010up surveillance of blood involvement of cutaneous lymphomas, as the disease stage is the most important prognostic factor in MF and SS; this was performed in only 10\u00a0% of patients. The first\u2010line treatment was topical (76\u00a0%), in particular with corticosteroids (66\u00a0%).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The findings from this healthcare research point to the need for increased guideline\u2010based care.<\/jats:p><\/jats:sec>","DOI":"10.1111\/ddg.14725","type":"journal-article","created":{"date-parts":[[2022,5,2]],"date-time":"2022-05-02T11:14:43Z","timestamp":1651490083000},"page":"643-651","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Care structure of patients with mycosis fungoides and S\u00e9zary syndrome in Germany \u2013 Care research based on SHI claims data"],"prefix":"10.1111","volume":"20","author":[{"given":"Chalid","family":"Assaf","sequence":"first","affiliation":[{"name":"Helios Klinikum Krefeld"},{"name":"Klinik f\u00fcr Dermatologie Venerologie und Allergologie Charit\u00e9 \u2013 Universit\u00e4tsmedizin Berlin [Department of dermatology venereology and allergology Charit\u00e9 University Hospital Berlin]"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gabor","family":"Dobos","sequence":"additional","affiliation":[{"name":"Klinik f\u00fcr Dermatologie Venerologie und Allergologie Charit\u00e9 \u2013 Universit\u00e4tsmedizin Berlin [Department of dermatology venereology and allergology Charit\u00e9 University Hospital Berlin]"},{"name":"Hopital Saint\u2010Louis, AP\u2010HP  Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Immo\u2010Maximilian","family":"Zech","sequence":"additional","affiliation":[{"name":"Kyowa Kirin GmbH  D\u00fcsseldorf"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Axel","family":"Doess","sequence":"additional","affiliation":[{"name":"Kyowa Kirin GmbH  D\u00fcsseldorf"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thomas","family":"Hibbe","sequence":"additional","affiliation":[{"name":"Kyowa Kirin GmbH  D\u00fcsseldorf"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Janusz J.","family":"Jadasz","sequence":"additional","affiliation":[{"name":"Kyowa Kirin GmbH  D\u00fcsseldorf"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,5,2]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1470-2045(18)30379-6"},{"key":"e_1_2_8_3_1","first-page":"1307","article-title":"Mycosis fungoides and S\u00e9zary syndrome","volume":"19","author":"Jonak C","year":"2021","journal-title":"J Dtsch Dermatol Ges"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-642-54676-1_514-1"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1055\/a-0807-3938"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.19644"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2133.2008.08852.x"},{"key":"e_1_2_8_8_1","unstructured":"DippelE AssafC BeckerJCet\u00a0al.AWMF S2k\u2010Leitlinie \u2013 Kutane Lymphome (ICD10 C82 \u2010 C86) Update 2021) AWMF\u2010Register\u2010Nr. 032\u2010027. Available from:https:\/\/www.awmf.org\/leitlinien\/detail\/ll\/032\u2010027.html[Last accessed December 15 2021]."},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2141.2011.08852.x"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2004-09-3502"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2007-03-055749"},{"key":"e_1_2_8_12_1","doi-asserted-by":"crossref","first-page":"373","DOI":"10.1111\/ddg.14400","article-title":"Importance of diagnostics and risk of secondary malignancies in primary cutaneous lymphomas","volume":"19","author":"Scheu A","year":"2021","journal-title":"J Dtsch Dermatol Ges"},{"key":"e_1_2_8_13_1","unstructured":"BarnesB KraywinkelK NowossadeckEet\u00a0al.Bericht zum Krebsgeschehen in Deutschland 2016. Available from:https:\/\/edoc.rki.de\/handle\/176904\/3264[Last accessed December 15 2021]."},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(08)60420-1"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00105-017-4021-5"},{"key":"e_1_2_8_16_1","doi-asserted-by":"crossref","first-page":"561","DOI":"10.1111\/ddg.12376","article-title":"New and established treatment options for mycosis fungoides and S\u00e9zary syndrome \u2010 an update","volume":"12","author":"Dugas\u2010Breit S","year":"2014","journal-title":"J Dtsch Dermatol Ges"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1610-0387.2007.06337.x"},{"key":"e_1_2_8_18_1","doi-asserted-by":"crossref","first-page":"123","DOI":"10.1111\/ddg.13691","article-title":"Primary cutaneous CD4+ small\/medium pleomorphic T\u2010cell lymphoproliferative disorder: Where do we stand? A systematic review","volume":"17","author":"Salah E","year":"2019","journal-title":"J Dtsch Dermatol Ges"},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/ddg.14509"},{"key":"e_1_2_8_20_1","unstructured":"CalliesR\u2010C.Charakteristika Prognose und prognostische Faktoren des S\u00e9zary Syndroms Doctoral thesis Charit\u00e9 \u2013 Universit\u00e4tsmedizin Berlin 2014."},{"key":"e_1_2_8_21_1","unstructured":"Orphanet(ed.).S\u00e9zary\u2010Syndrom (ORPHA:3162). Available from:https:\/\/www.orpha.net\/consor\/cgi\u2010bin\/OC_Exp.php?Lng=DE&Expert=3162[Last accessed December 15 2021]."},{"key":"e_1_2_8_22_1","unstructured":"AltmeyerP Bacharach\u2010BuhlesM.S\u00e9zary\u2010Syndrom C84.1. In: Altmeyers Enzyklop\u00e4die \u2010 Fachbereich Dermatologie. Available from:https:\/\/www.altmeyers.org\/de\/dermatologie\/sezary\u2010syndrom\u20103698[Last accessed December 15 2021]."},{"key":"e_1_2_8_23_1","doi-asserted-by":"crossref","first-page":"256","DOI":"10.1111\/ddg.12900","article-title":"S\u00e9zary syndrome: old enigmas, new targets","volume":"14","author":"Nicolay JP","year":"2016","journal-title":"J Dtsch Dermatol Ges"},{"key":"e_1_2_8_24_1","unstructured":"EURORDIS\u2010Rare Diseases Europe.About Rare Diseases. Available from:https:\/\/www.eurordis.org\/about\u2010rare\u2010diseases[Last accessed December 15 2021]."},{"key":"e_1_2_8_25_1","unstructured":"European Commission.Rare diseases. Available from:https:\/\/ec.europa.eu\/health\/non_communicable_diseases\/rare_diseases_de[Last accessed December 15 2021]."},{"key":"e_1_2_8_26_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.healthpol.2016.01.007"},{"key":"e_1_2_8_27_1","unstructured":"Arbeitsgruppe Erhebung und Nutzung von Sekund\u00e4rdaten (AGENS) Deutsche Gesellschaft f\u00fcr Sozialmedizin und Pr\u00e4vention (DGSMP) Deutsche Gesellschaft f\u00fcr Epidemiologie (DGEpi). Gute Praxis Sekund\u00e4rdatenanalyse (GPS) Leitlinien und Empfehlungen 3. Fassung 2012 geringf\u00fcgig modifiziert 2014. Available from:https:\/\/www.dgepi.de\/assets\/Leitlinien\u2010und\u2010Empfehlungen\/GPS_revision2\u2010final_august2014.pdf[Last accessed December 15 2021]."},{"key":"e_1_2_8_28_1","doi-asserted-by":"publisher","DOI":"10.1002\/pds.3895"},{"key":"e_1_2_8_29_1","unstructured":"Dr\u00f6slerS GarbeE HasfordJet\u00a0al.Sondergutachten zu den Wirkungen des morbidit\u00e4tsorientierten Risikostrukturausgleichs. Available from:https:\/\/www.bundesgesundheitsministerium.de\/fileadmin\/Dateien\/5_Publikationen\/Gesundheit\/Berichte\/Sondergutachten_Wirkung_RSA_2017.pdf[Last accessed December 15 2021]."},{"key":"e_1_2_8_30_1","doi-asserted-by":"publisher","DOI":"10.1515\/labm.2000.24.6-7.277"},{"key":"e_1_2_8_31_1","unstructured":"Orphanet(ed.).Mycosis fungoides (ORPHA: 2584). Available from:https:\/\/www.orpha.net\/consor\/cgi\u2010bin\/OC_Exp.php?Lng=DE&Expert=2584[Last accessed December 15 2021]."},{"key":"e_1_2_8_32_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.17258"},{"key":"e_1_2_8_33_1","doi-asserted-by":"crossref","first-page":"383","DOI":"10.1111\/ddg.14342","article-title":"Combination of brentuximab\u2010vedotin with skin\u2010directed therapies extends the time to the next therapeutic line in patients with cutaneous T\u2010cell lymphoma","volume":"19","author":"Stranzenbach R","year":"2021","journal-title":"J Dtsch Dermatol Ges"},{"key":"e_1_2_8_34_1","doi-asserted-by":"crossref","first-page":"193","DOI":"10.1111\/ddg.14044","article-title":"Combined total skin radiotherapy and immune checkpoint inhibitors: A promising potential treatment for mycosis fungoides and Sezary syndrome","volume":"18","author":"Elsayad K","year":"2020","journal-title":"J Dtsch Dermatol Ges"},{"key":"e_1_2_8_35_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.19720"}],"container-title":["JDDG: Journal der Deutschen Dermatologischen Gesellschaft"],"original-title":[],"language":"de","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/ddg.14725","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/ddg.14725","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/ddg.14725","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,20]],"date-time":"2023-08-20T04:30:11Z","timestamp":1692505811000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/ddg.14725"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,5]]},"references-count":34,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2022,5]]}},"alternative-id":["10.1111\/ddg.14725"],"URL":"https:\/\/doi.org\/10.1111\/ddg.14725","archive":["Portico"],"relation":{},"ISSN":["1610-0379","1610-0387"],"issn-type":[{"value":"1610-0379","type":"print"},{"value":"1610-0387","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,5]]},"assertion":[{"value":"2021-10-08","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-12-20","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-05-02","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}