{"id":42591,"date":"2014-01-23T10:17:51","date_gmt":"2014-01-23T16:17:51","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=42591"},"modified":"2026-10-12T10:05:46","modified_gmt":"2026-10-12T15:05:46","slug":"premio-de-2014","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/es\/2014-award\/","title":{"rendered":"Dise\u00f1o y creaci\u00f3n de una base de datos de registro mundial sobre la enfermedad de Erdheim-Chester"},"content":{"rendered":"[et_pb_section global_module=\"47416\"][\/et_pb_section]\n<h4><strong>Year Awarded:<\/strong> 2014<br \/>\n<strong>Amount: <\/strong>316,000 USD<\/h4>\n<p>The 2014 grant was awarded to principal investigators Eli Diamond, MD from Memorial Sloan-Kettering Cancer Center in New York, and Matthew Collin from Newcastle University in the UK, for the \u201cDesign and Creation of a Global Registry Database for Erdheim-Chester Disease\u201d.\u00a0 The patient registry will be a collection of standardized information about the ECD group of patients to evaluate specified outcomes defined by this particular disease.\u00a0 The data will serve as a scientific, clinical purpose.\u00a0 This is expected to be a two (2) year effort with a budget of $316,000 being granted from the ECD Global Alliance.<\/p>\n<h3><strong>Interim Report<\/strong><\/h3>\n<p>The ECD Patient Registry has been broadened since it was first developed.\u00a0 It now encompasses additional histiocytic disorders.\u00a0 Numerous papers have been published based on the data learned from this study to include, but not limited to:<\/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\u2013Chester disease: a 30-patient series, Neuro-Oncology, Volume 22, Issue 7, July 2020, Pages 979\u2013992,\u00a0<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 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.\u00a0<sup>18<\/sup>F-FDG 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 Disease Due to a Novel Internal Duplication of 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 y Matthew Collin reciben una subvenci\u00f3n de $316 000 para desarrollar una base de datos de registro mundial sobre la enfermedad de Erdheim-Chester.<br \/>\nEl registro exhaustivo de pacientes se ha ampliado para incluir m\u00faltiples trastornos histioc\u00edticos, lo que ha dado lugar a importantes publicaciones de investigaci\u00f3n que aportan informaci\u00f3n sobre los aspectos neurol\u00f3gicos, cl\u00ednicos y relacionados con la experiencia de los pacientes de la enfermedad.<\/p>","protected":false},"author":20,"featured_media":92345,"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":[306],"tags":[328],"class_list":["post-42591","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-past-awards","tag-328"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/42591","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/comments?post=42591"}],"version-history":[{"count":1,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/42591\/revisions"}],"predecessor-version":[{"id":176435,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/42591\/revisions\/176435"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media\/92345"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=42591"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/categories?post=42591"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/tags?post=42591"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}