{"id":282,"date":"2013-01-23T21:11:48","date_gmt":"2013-01-23T21:11:48","guid":{"rendered":"http:\/\/www.ssaki.eu\/?p=282"},"modified":"2013-04-14T23:34:02","modified_gmt":"2013-04-14T21:34:02","slug":"projekt-narodnej-databazy-primarnych-imunodeficiencii","status":"publish","type":"post","link":"https:\/\/www.ssaki.eu\/?p=282","title":{"rendered":"Projekt N\u00e1rodnej datab\u00e1zy prim\u00e1rnych imunodeficitov"},"content":{"rendered":"<p>V\u00e1\u017een\u00e9 kolegyne, v\u00e1\u017een\u00ed kolegovia,<\/p>\n<p>Z\u00edskanie \u00fadajov o v\u00fdskyte a charaktere z\u00e1va\u017en\u00fdch chronick\u00fdch chor\u00f4b je z\u00e1kladn\u00fdm predpokladom pre exaktn\u00e9 definovanie rozsahu zdravotn\u00e9ho probl\u00e9mu a lep\u0161ie zabezpe\u010denie nevyhnutnej zdravotnej starostlivosti. Prim\u00e1rne imunodeficiencie s\u00fa nehomog\u00e9nnou skupinou vroden\u00fdch defektov imunity, ktor\u00e9 u v\u00fdznamnej \u010dasti ich nosite\u013eov ved\u00fa k v\u00fdvoju klinicky z\u00e1va\u017en\u00fdch infek\u010dn\u00fdch komplik\u00e1ci\u00ed, autoimunitn\u00fdch prejavov, chronick\u00fdch z\u00e1palov\u00fdch zmien, ale aj lymfoproliferat\u00edvnych stavov. Pacienti s prim\u00e1rnymi imunodeficienciami vy\u017eaduj\u00fa \u0161pecifick\u00e9 diagnostick\u00e9 a terapeutick\u00e9 postupy, spravidla s vy\u0161\u0161ou n\u00e1kladovos\u0165ou, pre ktor\u00e9 je potrebn\u00e9 vytv\u00e1ra\u0165 person\u00e1lne aj materi\u00e1lne podmienky. Z t\u00fdchto d\u00f4vodov bol iniciovan\u00fd Projekt n\u00e1rodnej datab\u00e1zy prim\u00e1rnych imunodeficienci\u00ed (\u010falej len <a title=\"N\u00e1rodn\u00e1 datab\u00e1za prim\u00e1rnych deficienci\u00ed\" href=\"http:\/\/www.ssaki.eu\/?page_id=289\">Datab\u00e1za<\/a>), do ktor\u00e9ho v\u00e1s, lek\u00e1rov \u0161pecializ\u00e1cie klinick\u00e1 imunol\u00f3gia (KIA) \u010do najsrde\u010dnej\u0161ie poz\u00fdvame.<\/p>\n<p><!--more-->V pilotnej \u010dasti projektu ide o z\u00edskanie z\u00e1kladn\u00fdch inform\u00e1ci\u00ed o klinicky z\u00e1va\u017en\u00fdch vroden\u00fdch imunodeficienci\u00e1ch, tak ako ich definuje Eur\u00f3pska spolo\u010dnos\u0165 pre prim\u00e1rne imunodeficiencie (<a href=\"http:\/\/www.esid.org\">www.esid.org<\/a> ). Obraciame sa na t\u00fdch z\u00a0v\u00e1s, ktor\u00ed m\u00e1te tak\u00fdchto pacientov v\u00a0starostlivosti, aby ste poskytli \u00fadaje do Datab\u00e1zy. Datab\u00e1za je prostredn\u00edctvom <a title=\"N\u00e1rodn\u00e1 datab\u00e1za prim\u00e1rnych deficienci\u00ed\" href=\"http:\/\/www.ssaki.eu\/?page_id=289\">web rozhrania<\/a> \u013eahko dostupn\u00e1 a\u00a0\u00fadaje s\u00fa rozsahom ve\u013emi stru\u010dn\u00e9. V\u00a0tejto pilotnej \u010dasti by sme chceli zmapova\u0165 predov\u0161etk\u00fdm situ\u00e1ciu u\u00a0pacientov s\u00a0jednozna\u010dn\u00fdmi diagn\u00f3zami, pacientov na substitu\u010dnej lie\u010dbe imunoglobul\u00ednmi, rastov\u00fdmi faktormi, cytok\u00ednmi, pacientov po transplant\u00e1cii krvotvorn\u00fdch buniek. Datab\u00e1za obsahuje minim\u00e1lny po\u010det identifika\u010dn\u00fdch znakov, tak aby ostala zachovan\u00e1 anonymita pacienta, v\u00a0rozsahu z\u00e1kona o Ochrane osobn\u00fdch \u00fadajov \u010d. 428\/2002 Z. z. \u00a0a s\u00fa\u010dasne sa v\u00a0\u010do najvy\u0161\u0161ej miere zamedzilo duplicite \u00fadajov. Jedn\u00fdm z\u00a0ve\u013emi d\u00f4le\u017eit\u00fdch \u00fadajov datab\u00e1zy je preto meno o\u0161etruj\u00faceho lek\u00e1ra. Odpor\u00fa\u010dame, aby ste si\u00a0 zoznam vami vlo\u017een\u00fdch pacientov vytla\u010dili a\u00a0archivovali.<\/p>\n<p>Dotazn\u00edk je zalo\u017een\u00fd na zozname jednotliv\u00fdch pacienov (riadky), veden\u00fdch u individu\u00e1lneho lek\u00e1ra. Diagn\u00f3zy s\u00fa usporiadan\u00e9 pod\u013ea medzin\u00e1rodne platnej klasifik\u00e1cie. K\u00f3dovanie diagn\u00f3z n\u00e1jdete hne\u010f pri vstupe na str\u00e1nku datab\u00e1zy a s\u00fa k dispoz\u00edcii aj pri vkladan\u00ed jednotliv\u00fdch pacientov.<\/p>\n<p>V mene v\u00fdboru Slovenskej spolo\u010dnosti alergol\u00f3gie a klinickej imunol\u00f3gie<\/p>\n<p>doc. MUDr. Peter \u010ci\u017en\u00e1r, CSc<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>V\u00e1\u017een\u00e9 kolegyne, v\u00e1\u017een\u00ed kolegovia, Z\u00edskanie \u00fadajov o v\u00fdskyte a charaktere z\u00e1va\u017en\u00fdch chronick\u00fdch chor\u00f4b je z\u00e1kladn\u00fdm predpokladom pre exaktn\u00e9 definovanie rozsahu zdravotn\u00e9ho probl\u00e9mu a lep\u0161ie zabezpe\u010denie nevyhnutnej zdravotnej starostlivosti. Prim\u00e1rne imunodeficiencie s\u00fa nehomog\u00e9nnou skupinou vroden\u00fdch&#46;&#46;&#46;<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[],"class_list":["post-282","post","type-post","status-publish","format-standard","hentry","category-sprava-vyboru"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Projekt N\u00e1rodnej datab\u00e1zy prim\u00e1rnych imunodeficitov - Slovensk\u00e1 spolo\u010dnos\u0165 alergol\u00f3gie a klinickej imunol\u00f3gie<\/title>\n<meta name=\"description\" content=\"Sme odborn\u00e1 splo\u010dnos\u0165, ktor\u00e1 zdru\u017euje klinick\u00fdch imunol\u00f3gov a alergol\u00f3gov, ako aj in\u00fdch odborn\u00edkov so z\u00e1ujmom o tento odbor. Na\u0161a spolo\u010dnos\u0165 je hlavn\u00fdm organiz\u00e1torom kontunu\u00e1lneho vzdel\u00e1vania v tomto odbore na Slovensku.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.ssaki.eu\/?p=282\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Projekt N\u00e1rodnej datab\u00e1zy prim\u00e1rnych imunodeficitov - Slovensk\u00e1 spolo\u010dnos\u0165 alergol\u00f3gie a klinickej imunol\u00f3gie\" \/>\n<meta property=\"og:description\" content=\"Sme odborn\u00e1 splo\u010dnos\u0165, ktor\u00e1 zdru\u017euje klinick\u00fdch imunol\u00f3gov a alergol\u00f3gov, ako aj in\u00fdch odborn\u00edkov so z\u00e1ujmom o tento odbor. Na\u0161a spolo\u010dnos\u0165 je hlavn\u00fdm organiz\u00e1torom kontunu\u00e1lneho vzdel\u00e1vania v tomto odbore na Slovensku.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.ssaki.eu\/?p=282\" \/>\n<meta property=\"og:site_name\" content=\"Slovensk\u00e1 spolo\u010dnos\u0165 alergol\u00f3gie a klinickej imunol\u00f3gie\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/alergologoviaimunologoviaSK\" \/>\n<meta property=\"article:published_time\" content=\"2013-01-23T21:11:48+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2013-04-14T21:34:02+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.ssaki.eu\/wp-content\/uploads\/2021\/01\/STOP_COVID_SSAKI-e1609772027682.png\" \/>\n\t<meta property=\"og:image:width\" content=\"640\" \/>\n\t<meta property=\"og:image:height\" content=\"360\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"adminaki\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Autor\" \/>\n\t<meta name=\"twitter:data1\" content=\"adminaki\" \/>\n\t<meta name=\"twitter:label2\" content=\"Predpokladan\u00fd \u010das \u010d\u00edtania\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 min\u00faty\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/www.ssaki.eu\\\/?p=282#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.ssaki.eu\\\/?p=282\"},\"author\":{\"name\":\"adminaki\",\"@id\":\"https:\\\/\\\/www.ssaki.eu\\\/#\\\/schema\\\/person\\\/1d95f79dbd766088c7fa2a446408ca9e\"},\"headline\":\"Projekt N\u00e1rodnej datab\u00e1zy prim\u00e1rnych imunodeficitov\",\"datePublished\":\"2013-01-23T21:11:48+00:00\",\"dateModified\":\"2013-04-14T21:34:02+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/www.ssaki.eu\\\/?p=282\"},\"wordCount\":438,\"publisher\":{\"@id\":\"https:\\\/\\\/www.ssaki.eu\\\/#organization\"},\"articleSection\":[\"V\u00fdbor\"],\"inLanguage\":\"sk-SK\"},{\"@type\":[\"WebPage\",\"MedicalWebPage\"],\"@id\":\"https:\\\/\\\/www.ssaki.eu\\\/?p=282\",\"url\":\"https:\\\/\\\/www.ssaki.eu\\\/?p=282\",\"name\":\"Projekt N\u00e1rodnej datab\u00e1zy prim\u00e1rnych imunodeficitov - Slovensk\u00e1 spolo\u010dnos\u0165 alergol\u00f3gie a klinickej imunol\u00f3gie\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.ssaki.eu\\\/#website\"},\"datePublished\":\"2013-01-23T21:11:48+00:00\",\"dateModified\":\"2013-04-14T21:34:02+00:00\",\"description\":\"Sme odborn\u00e1 splo\u010dnos\u0165, ktor\u00e1 zdru\u017euje klinick\u00fdch imunol\u00f3gov a alergol\u00f3gov, ako aj in\u00fdch odborn\u00edkov so z\u00e1ujmom o tento odbor. 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