{"id":68064,"date":"2014-01-23T10:17:51","date_gmt":"2014-01-23T16:17:51","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/conception-et-creation-dune-base-de-donnees-de-registre-mondial-erdheim-chester-maladies\/"},"modified":"2025-09-11T09:48:51","modified_gmt":"2025-09-11T14:48:51","slug":"conception-et-creation-dune-base-de-donnees-de-registre-mondial-erdheim-chester-maladies","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/conception-et-creation-dune-base-de-donnees-de-registre-mondial-erdheim-chester-maladies\/","title":{"rendered":"Conception et cr\u00e9ation d&rsquo;une base de donn\u00e9es de registre mondial Erdheim-Chester maladies"},"content":{"rendered":"[et_pb_section global_module=\"47416\"][\/et_pb_section]\n<h4><strong>Ann\u00e9e d&rsquo;attribution :<\/strong> 2014<br \/>\n<strong>Montant : <\/strong>316 000 USD<\/h4>\n<p>La subvention de 2014 a \u00e9t\u00e9 attribu\u00e9e aux chercheurs principaux Eli Diamond, du Memorial Sloan-Kettering Cancer Center \u00e0 New York, et Matthew Collin de l&rsquo;Universit\u00e9 de Newcastle au Royaume-Uni, pour la \u00ab\u00a0Conception et la cr\u00e9ation d&rsquo;une base de donn\u00e9es de registre mondial pour les maladies infectieuses\u00a0\u00bb. Erdheim-Chester Disease\u00a0\u00bb. Le registre des patients sera une collection d&rsquo;informations standardis\u00e9es sur le groupe de patients ECD afin d&rsquo;\u00e9valuer les r\u00e9sultats sp\u00e9cifiques d\u00e9finis par cette maladie particuli\u00e8re. Les donn\u00e9es seront utilis\u00e9es \u00e0 des fins scientifiques et cliniques. Ce projet devrait durer deux (2) ans et b\u00e9n\u00e9ficier d&rsquo;un budget de 316 000 dollars octroy\u00e9 par l&rsquo;Alliance mondiale ECD.   <\/p>\n<h3><strong>Rapport interm\u00e9diaire<\/strong><\/h3>\n<p>Le registre des patients ECD a \u00e9t\u00e9 \u00e9largi depuis sa cr\u00e9ation. Il englobe d\u00e9sormais d&rsquo;autres troubles histiocytaires. De nombreux articles ont \u00e9t\u00e9 publi\u00e9s sur la base des donn\u00e9es recueillies dans le cadre de cette \u00e9tude :  <\/p>\n<ul>\n<li>Ankush Bhatia, Vaios Hatzoglou, Gary Ulaner, Raajit Rampal, David M Hyman, Omar Abdel-Wahab, Benjamin H Durham, Ahmet Dogan, Neval Ozkaya, Mariko Yabe, Kseniya Petrova-Drus, Katherine S Panageas, Anne Reiner, Marc Rosenblum, Eli L Diamond, Neurologic and oncologic features of Erdheim-Chester disease : a 30-patient series, Neuro-Oncology, Volume 22, Issue 7, July 2020, Pages 979-992, <a href=\"https:\/\/doi.org\/10.1093\/neuonc\/noaa008\" target=\"_blank\" rel=\"noopener\" aria-label=\"https:\/\/doi.org\/10.1093\/neuonc\/noaa008 - opens in new tab - opens in new tab\">https:\/\/doi.org\/10.1093\/neuonc\/noaa008<\/a><\/li>\n<li>Reiner AS, Bossert D, Buthorn JJ, Sigler AM, Gonen S, Fournier D, Brewer K, Corkran J, Goyal G, Allen CE, McClain KL, Atkinson TM, Lynch KA, Mao JJ, Panageas KS, Diamond EL. Patient-reported fatigue and pain in Erdheim-Chester disease : a registry-based, mixed methods study. Haematologica. 2023 Jun 1;108(6):1685-1690. doi : 10.3324\/haematol.2022.282287. PMID : 36546452 ; PMCID : PMC10230438.     <\/li>\n<li>Reiner AS, Applebaum AJ, Bossert D, Buthorn JJ, Sigler AM, Fournier D, Brewer K, Atkinson TM, Lynch KA, Gilliland J, Mao JJ, Panageas KS, Diamond EL. Dyadic communication in rare cancer : a registry-based study of patients with disease and their caregivers. Erdheim-Chester disease and their caregivers. Blood Adv. 2023 Oct 10;7(19):5904-5910. doi : 10.1182\/bloodadvances.2023010827. PMID : 37540824 ; PMCID : PMC10558707.    <\/li>\n<li>Kirchner J, Hatzoglou V, Buthorn JB, Bossert D, Sigler AM, Reiner AS, Ulaner GA, Diamond EL. <sup>18F-FDG<\/sup>PET\/CT versus anatomic imaging for evaluating disease extent and clinical trial eligibility in Erdheim-Chester disease : results from 50 patients in a registry study. Eur J Nucl Med Mol Imaging. 2021 Apr;48(4):1154-1165. doi : 10.1007\/s00259-020-05047-8. Epub 2020 Oct 15. PMID : 33057928 ; PMCID : PMC8041681.     <\/li>\n<li>Riancho JA, Hern\u00e1ndez JL, Gonz\u00e1lez-Vela C, L\u00f3pez-Sundh AE, Gonz\u00e1lez-Lopez MA, Gomez de la Fuente F, Quirce R, Diamond EL. Erdheim-Chester Maladie due \u00e0 une nouvelle duplication interne de NRAS : Response to Targeted Therapy with Cobimetinib. Int J Mol Sci. 2023 Oct 23;24(20):15467. doi : 10.3390\/ijms242015467. PMID : 37895147 ; PMCID : PMC10606995.     <\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>Eli Diamond et Matthew Collin re\u00e7oivent une subvention de 316 000 $ pour d\u00e9velopper une base de donn\u00e9es de registre mondial pour les maladies histiocytaires. Erdheim-Chester Disease.<br \/>\nLe registre complet des patients s&rsquo;est \u00e9tendu \u00e0 de multiples troubles histiocytaires, g\u00e9n\u00e9rant d&rsquo;importantes publications de recherche qui donnent un aper\u00e7u des aspects neurologiques, cliniques et de l&rsquo;exp\u00e9rience des patients.<\/p>\n","protected":false},"author":20,"featured_media":92348,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[612],"tags":[1764],"class_list":["post-68064","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-recompenses-passees","tag-2014-fr"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/68064","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=68064"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/68064\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/92348"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=68064"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=68064"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=68064"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}