{"id":30219,"date":"2020-01-02T20:16:26","date_gmt":"2020-01-03T01:16:26","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=30219"},"modified":"2026-08-13T12:46:55","modified_gmt":"2026-08-13T17:46:55","slug":"%ce%bc%ce%b9%ce%b1-%cf%80%ce%bf%ce%bb%cf%85%ce%ba%ce%b5%ce%bd%cf%84%cf%81%ce%b9%ce%ba%ce%ae-%ce%bc%ce%b5%ce%bb%ce%ad%cf%84%ce%b7-%cf%83%cf%87%ce%b5%cf%84%ce%b9%ce%ba%ce%ac-%ce%bc%ce%b5-%cf%84%ce%bf","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/el\/a-multicentre-study-of-ecd-clinical-phenotype-and-outcome\/","title":{"rendered":"\u039c\u03b9\u03b1 \u03c0\u03bf\u03bb\u03c5\u03ba\u03b5\u03bd\u03c4\u03c1\u03b9\u03ba\u03ae \u03bc\u03b5\u03bb\u03ad\u03c4\u03b7 \u03c4\u03bf\u03c5 \u03ba\u03bb\u03b9\u03bd\u03b9\u03ba\u03bf\u03cd \u03c6\u03b1\u03b9\u03bd\u03bf\u03c4\u03cd\u03c0\u03bf\u03c5 \u03ba\u03b1\u03b9 \u03c4\u03b7\u03c2 \u03ad\u03ba\u03b2\u03b1\u03c3\u03b7\u03c2 \u03c4\u03b7\u03c2 ECD"},"content":{"rendered":"<p>The following link is to the protocol for an ECD study as announced by Dr. Augusto Vaglio of the University of Parma in Italy. ECD patients are invited to participate by sending in medical records. The study aims to gather medical records for 120 ECD patients and then analyze them to expand the knowledge on Erdheim-Chester Disease. The goal of the study is to allow earlier diagnosis, better classification of the different disease forms, and improved prediction of the patient prognosis.<\/p>\n<p>\u0391\u03c5\u03c4\u03ae \u03b5\u03af\u03bd\u03b1\u03b9 \u03bc\u03b9\u03b1 \u03b5\u03c5\u03ba\u03b1\u03b9\u03c1\u03af\u03b1 \u03b3\u03b9\u03b1 \u03ba\u03ac\u03b8\u03b5 \u03b1\u03c3\u03b8\u03b5\u03bd\u03ae \u03bd\u03b1 \u03c3\u03c5\u03bc\u03b2\u03ac\u03bb\u03b5\u03b9 \u03c3\u03c4\u03b7\u03bd \u03c0\u03c1\u03bf\u03c3\u03c0\u03ac\u03b8\u03b5\u03b9\u03b1 \u03bd\u03b1 \u03bc\u03ac\u03b8\u03bf\u03c5\u03bc\u03b5 \u03c0\u03b5\u03c1\u03b9\u03c3\u03c3\u03cc\u03c4\u03b5\u03c1\u03b1 \u03b3\u03b9\u03b1 \u03b1\u03c5\u03c4\u03ae \u03c4\u03b7\u03bd \u03b1\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b1. \u0395\u03af\u03bd\u03b1\u03b9 \u03ba\u03ac\u03c4\u03b9 \u03c0\u03bf\u03c5 \u03bc\u03c0\u03bf\u03c1\u03b5\u03af \u03bd\u03b1 \u03ba\u03ac\u03bd\u03b5\u03b9 \u03bf \u03ba\u03ac\u03b8\u03b5 \u03b1\u03c3\u03b8\u03b5\u03bd\u03ae\u03c2 \u03b3\u03b9\u03b1 \u03bd\u03b1 \u03b2\u03bf\u03b7\u03b8\u03ae\u03c3\u03b5\u03b9 \u03c4\u03bf\u03bd \u03b1\u03b3\u03ce\u03bd\u03b1 \u03bc\u03b1\u03c2.<\/p>\n<p>\u03a0\u03b1\u03c1\u03b1\u03ba\u03b1\u03bb\u03bf\u03cd\u03bc\u03b5 \u03b4\u03b9\u03b1\u03b2\u03ac\u03c3\u03c4\u03b5 \u03c4\u03b9\u03c2 \u03c3\u03c5\u03bd\u03b7\u03bc\u03bc\u03ad\u03bd\u03b5\u03c2 \u03c0\u03bb\u03b7\u03c1\u03bf\u03c6\u03bf\u03c1\u03af\u03b5\u03c2. \u0395\u03ac\u03bd \u03b5\u03c0\u03b9\u03b8\u03c5\u03bc\u03b5\u03af\u03c4\u03b5 \u03bd\u03b1 \u03c3\u03c5\u03bc\u03bc\u03b5\u03c4\u03ac\u03c3\u03c7\u03b5\u03c4\u03b5 \u03c3\u03c4\u03b7 \u03bc\u03b5\u03bb\u03ad\u03c4\u03b7, \u03b8\u03b1 \u03c0\u03c1\u03ad\u03c0\u03b5\u03b9 \u03bd\u03b1 \u03c3\u03c4\u03b5\u03af\u03bb\u03b5\u03c4\u03b5 \u03c4\u03bf \u03b9\u03b1\u03c4\u03c1\u03b9\u03ba\u03cc \u03c3\u03b1\u03c2 \u03b9\u03c3\u03c4\u03bf\u03c1\u03b9\u03ba\u03cc, \u03cc\u03c0\u03c9\u03c2 \u03bf\u03c1\u03af\u03b6\u03b5\u03c4\u03b1\u03b9 \u03c3\u03c4\u03bf \u03ad\u03b3\u03b3\u03c1\u03b1\u03c6\u03bf \u03c0\u03c1\u03bf\u03c2 \u03c4\u03bf \u03bf\u03c0\u03bf\u03af\u03bf \u03c0\u03b1\u03c1\u03b1\u03c0\u03ad\u03bc\u03c0\u03b5\u03b9 \u03bf \u03c3\u03cd\u03bd\u03b4\u03b5\u03c3\u03bc\u03bf\u03c2 \u201c\u039b\u03af\u03c3\u03c4\u03b1 \u03c3\u03c4\u03bf\u03b9\u03c7\u03b5\u03af\u03c9\u03bd \u03c0\u03c1\u03bf\u03c2 \u03b1\u03c0\u03bf\u03c3\u03c4\u03bf\u03bb\u03ae\u201d, \u03b5\u03af\u03c4\u03b5 \u03c3\u03c4\u03bf \u03b3\u03c1\u03b1\u03c6\u03b5\u03af\u03bf \u03c4\u03bf\u03c5 \u0394\u03c1. Vaglio \u03c3\u03c4\u03b7\u03bd \u0399\u03c4\u03b1\u03bb\u03af\u03b1, \u03b5\u03af\u03c4\u03b5 \u03c3\u03c4\u03b7\u03bd ECD Global Alliance, \u03b7 \u03bf\u03c0\u03bf\u03af\u03b1 \u03c3\u03c4\u03b7 \u03c3\u03c5\u03bd\u03ad\u03c7\u03b5\u03b9\u03b1 \u03b8\u03b1 \u03c4\u03bf \u03b4\u03b9\u03b1\u03b2\u03b9\u03b2\u03ac\u03c3\u03b5\u03b9 \u03c3\u03c4\u03bf\u03bd \u0394\u03c1. Vaglio. \u0395\u03ac\u03bd \u03c4\u03b1 \u03c3\u03c4\u03b5\u03af\u03bb\u03b5\u03c4\u03b5 \u03b1\u03c0\u03b5\u03c5\u03b8\u03b5\u03af\u03b1\u03c2 \u03c3\u03c4\u03bf\u03bd \u0394\u03c1. Vaglio, \u03a0\u0391\u03a1\u0391\u039a\u0391\u039b\u039f\u03a5\u039c\u0395 \u03bd\u03b1 \u03ba\u03c1\u03b1\u03c4\u03ae\u03c3\u03b5\u03c4\u03b5 \u03b1\u03bd\u03c4\u03af\u03b3\u03c1\u03b1\u03c6\u03bf \u03cc\u03bb\u03c9\u03bd \u03c4\u03c9\u03bd \u03b5\u03b3\u03b3\u03c1\u03ac\u03c6\u03c9\u03bd \u03c0\u03bf\u03c5 \u03c3\u03c4\u03ad\u03bb\u03bd\u03b5\u03c4\u03b5, \u03ba\u03b1\u03b8\u03ce\u03c2 \u03b5\u03bb\u03c0\u03af\u03b6\u03bf\u03c5\u03bc\u03b5 \u03cc\u03c4\u03b9 \u03c3\u03cd\u03bd\u03c4\u03bf\u03bc\u03b1 \u03b8\u03b1 \u03be\u03b5\u03ba\u03b9\u03bd\u03ae\u03c3\u03bf\u03c5\u03bd \u03c0\u03b5\u03c1\u03b9\u03c3\u03c3\u03cc\u03c4\u03b5\u03c1\u03b5\u03c2 \u03bc\u03b5\u03bb\u03ad\u03c4\u03b5\u03c2 \u03ba\u03b1\u03b9 \u03b5\u03bd\u03b4\u03ad\u03c7\u03b5\u03c4\u03b1\u03b9 \u03bd\u03b1 \u03c7\u03c1\u03b5\u03b9\u03b1\u03c3\u03c4\u03bf\u03cd\u03bd \u03c4\u03b1 \u03af\u03b4\u03b9\u03b1 \u03b1\u03c1\u03c7\u03b5\u03af\u03b1.<\/p>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2015\/04\/Vaglio_Phenotype_2010_12_Checklist.pdf\" target=\"_blank\" rel=\"noopener\">\u039b\u03af\u03c3\u03c4\u03b1 \u03b5\u03bb\u03ad\u03b3\u03c7\u03bf\u03c5 \u03bc\u03b5 \u03c4\u03b1 \u03b1\u03bd\u03c4\u03b9\u03ba\u03b5\u03af\u03bc\u03b5\u03bd\u03b1 \u03c0\u03bf\u03c5 \u03c0\u03c1\u03ad\u03c0\u03b5\u03b9 \u03bd\u03b1 \u03c3\u03c4\u03b1\u03bb\u03bf\u03cd\u03bd<\/a><br \/>\n<a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2015\/04\/Vaglio_Phenotype_2010_12_Consent.pdf\" target=\"_blank\" rel=\"noopener\">\u0388\u03bd\u03c4\u03c5\u03c0\u03bf \u03c3\u03c5\u03b3\u03ba\u03b1\u03c4\u03ac\u03b8\u03b5\u03c3\u03b7\u03c2<\/a><br \/>\n<a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2015\/04\/Vaglio_Phenotype_2010_12_Protocol.pdf\" target=\"_blank\" rel=\"noopener\">\u03a0\u03c1\u03c9\u03c4\u03cc\u03ba\u03bf\u03bb\u03bb\u03bf<\/a><br \/>\n<a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2015\/04\/How_to_Obtain_Your_Medical_Records_2010-12-8.pdf\" target=\"_blank\" rel=\"noopener\">\u03a0\u03ce\u03c2 \u03bd\u03b1 \u03bb\u03ac\u03b2\u03b5\u03c4\u03b5 \u03c4\u03bf \u03b9\u03b1\u03c4\u03c1\u03b9\u03ba\u03cc \u03c3\u03b1\u03c2 \u03b9\u03c3\u03c4\u03bf\u03c1\u03b9\u03ba\u03cc<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>The following link is to the protocol for an ECD study as announced by Dr. Augusto Vaglio of the University of Parma in Italy. ECD patients are invited to participate [&hellip;]<\/p>\n","protected":false},"author":20,"featured_media":174698,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[51],"tags":[],"class_list":["post-30219","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/30219","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/comments?post=30219"}],"version-history":[{"count":1,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/30219\/revisions"}],"predecessor-version":[{"id":174726,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/30219\/revisions\/174726"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media\/174698"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media?parent=30219"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/categories?post=30219"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/tags?post=30219"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}