{"id":654,"date":"2021-07-13T09:54:41","date_gmt":"2021-07-13T08:54:41","guid":{"rendered":"http:\/\/www.cerped.fr\/?p=654"},"modified":"2023-01-12T16:27:10","modified_gmt":"2023-01-12T15:27:10","slug":"recherches-innovantes-en-pediatrie-les-problematiques-familiales","status":"publish","type":"post","link":"https:\/\/www.cerped.fr\/index.php\/2021\/07\/13\/recherches-innovantes-en-pediatrie-les-problematiques-familiales\/","title":{"rendered":"Recherches innovantes en p\u00e9diatrie<br>Les probl\u00e9matiques familiales associ\u00e9es"},"content":{"rendered":"\n<pre class=\"wp-block-preformatted\">juin 2020<\/pre>\n\n\n\n<p>Ce travail a \u00e9t\u00e9 r\u00e9alis\u00e9 \u00e0 partir d\u2019une initiative de l\u2019<a rel=\"noreferrer noopener\" href=\"http:\/\/www.unapecle.net\" target=\"_blank\">UNAPECLE<\/a> <em><a href=\"http:\/\/www.unapecle.net\" data-type=\"URL\" data-id=\"http:\/\/www.unapecle.net\" target=\"_blank\" rel=\"noreferrer noopener\">(Union Nationale des Associations de Parents d\u2019Enfants atteints de Cancer ou LEuc\u00e9mie)<\/a><\/em>. Les demandes des familles ont \u00e9t\u00e9 synth\u00e9tis\u00e9es \u00e0 partir de l\u2019enqu\u00eate qu\u2019elle a organis\u00e9e pendant plusieurs mois sur les recherches innovantes en p\u00e9diatrie.<\/p>\n\n\n\n<p>Les recherches innovantes en p\u00e9diatrie comprennent notamment les th\u00e9rapies g\u00e9niques, les immunomodulateurs empruntant des voies m\u00e9taboliques sp\u00e9cifiques, les traitements par <a href=\"https:\/\/www.youtube.com\/watch?v=QAWNKhhCNVE\" target=\"_blank\" rel=\"noreferrer noopener\">cellules chim\u00e9riques (Car-T cells)<\/a> et les recherches issues des \u00e9tudes in silico. Elles concernent de nombreuses pathologies, souvent des maladies rares. L\u2019oncop\u00e9diatrie, les maladies neuro-d\u00e9g\u00e9n\u00e9ratives et les maladies auto-immunes en sont les cibles actuellement les plus fr\u00e9quentes.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-black-color\"><strong>Enjeux concernant l\u2019information<\/strong> : protocole justifi\u00e9 par des m\u00e9canismes d\u2019action difficilement compr\u00e9hensibles par le grand public, vocabulaire inconnu et manque de rep\u00e8res usuels.<br><\/mark><\/li>\n\n\n\n<li><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-black-color\"><strong>Enjeux concernant les contraintes li\u00e9es \u00e0 la participation<\/strong> : dur\u00e9e importante de s\u00e9jour dans un centre r\u00e9f\u00e9rent souvent \u00e9loign\u00e9 du domicile, entra\u00eenant une souffrance li\u00e9e \u00e0 la s\u00e9paration de la famille, des copains, de l\u2019\u00e9cole. Les contraintes sont importantes pour les parents : absence professionnelle, perte de salaire, probl\u00e8mes de garde de la fratrie, probl\u00e8mes financiers li\u00e9s \u00e0 l\u2019avance des frais de transports et d\u2019h\u00e9bergement prolong\u00e9.<br><\/mark><\/li>\n\n\n\n<li><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-black-color\"><strong>Enjeux li\u00e9s \u00e0 l\u2019inclusion dans l\u2019\u00e9tude<\/strong> : \u00e0 la suite de visites de pr\u00e9-screening souvent longues et contraignantes, l\u2019enfant n\u2019est parfois pas inclus dans la recherche. Les familles en con\u00e7oivent une grande incompr\u00e9hension et une grande col\u00e8re.<\/mark><\/li>\n<\/ul>\n\n\n\n<div class=\"su-spacer\" style=\"height:20px\"><\/div><br><\/p>\n\n\n\n<a href=\"http:\/\/www.cerped.fr\/wp-content\/uploads\/2021\/07\/210518-Recherches-innovantes-en-pe\u0301diatrie-proble\u0301matiques-des-familles.pdf\" class=\"su-button su-button-style-flat\" style=\"color:#FFFFFF;background-color:#F95A09;border-color:#c84808;border-radius:5px\" target=\"_blank\" rel=\"noopener noreferrer\"><span style=\"color:#FFFFFF;padding:6px 16px;font-size:13px;line-height:20px;border-color:#fb8c53;border-radius:5px;text-shadow:none\"><i class=\"sui sui-file-pdf-o\" style=\"font-size:13px;color:#FFFFFF\"><\/i>  t\u00e9l\u00e9charger le PDF de l&rsquo;Avis du CERPed<\/span><\/a>\n\n\n\n<p><br><\/p>\n\n\n<div class=\"su-spacer\" style=\"height:20px\"><\/div>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>juin 2020 Ce travail a \u00e9t\u00e9 r\u00e9alis\u00e9 \u00e0 partir d\u2019une initiative de l\u2019UNAPECLE (Union Nationale des Associations de Parents d\u2019Enfants atteints de Cancer ou LEuc\u00e9mie). Les demandes des familles ont \u00e9t\u00e9 synth\u00e9tis\u00e9es \u00e0 partir de l\u2019enqu\u00eate qu\u2019elle a organis\u00e9e pendant plusieurs mois sur les recherches innovantes en p\u00e9diatrie. Les recherches innovantes en p\u00e9diatrie comprennent notamment [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":235,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[29,33],"tags":[],"class_list":["post-654","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-cpp","category-promoteurs"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.cerped.fr\/index.php\/wp-json\/wp\/v2\/posts\/654","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.cerped.fr\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.cerped.fr\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.cerped.fr\/index.php\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.cerped.fr\/index.php\/wp-json\/wp\/v2\/comments?post=654"}],"version-history":[{"count":9,"href":"https:\/\/www.cerped.fr\/index.php\/wp-json\/wp\/v2\/posts\/654\/revisions"}],"predecessor-version":[{"id":976,"href":"https:\/\/www.cerped.fr\/index.php\/wp-json\/wp\/v2\/posts\/654\/revisions\/976"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.cerped.fr\/index.php\/wp-json\/wp\/v2\/media\/235"}],"wp:attachment":[{"href":"https:\/\/www.cerped.fr\/index.php\/wp-json\/wp\/v2\/media?parent=654"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.cerped.fr\/index.php\/wp-json\/wp\/v2\/categories?post=654"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.cerped.fr\/index.php\/wp-json\/wp\/v2\/tags?post=654"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}