![\"\"](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/10\/blog-image-within-doc-300x300-1.png\")
<\/a>Se voc\u00ea \u00e9 um paciente ou cuidador direto, participe desta pesquisa at\u00e9 30 de outubro de 2021.<\/strong><\/em><\/p>\nResponda \u00e0 pesquisa<\/a><\/p>\n When the ECD Global Alliance (ECDGA) was formed research was needed to help improve the diagnosis and treatment of Erdheim-Chester Disease (ECD). Little was known about the disease and research was difficult because patient access was limited, and funding was almost non-existent. Only a little over a year after the formation of the ECDGA, the organization began to fund ECD-focused research.<\/p>\n The ECDGA has historically funded nine (9) research projects worth over $700,000 proposed by the medical community. This has worked well to push ECD research forward. In the past decade, much has been learned about ECD and there have been substantial breakthroughs in the treatment of ECD, including an FDA-approved treatment. Although not FDA-approved, other targeted treatments have been found as well. With better treatments, patients are now living more normal lives.<\/p>\n At\u00e9 o momento, as pesquisas realizadas t\u00eam se concentrado em (1) ci\u00eancia b\u00e1sica, (2) pesquisa de transi\u00e7\u00e3o e (3) pesquisa cl\u00ednica.<\/p>\n 1) Pesquisa em Ci\u00eancias B\u00e1sicas<\/span> allows scientists to do lab investigations to increase knowledge and understanding of ECD. The ECD-funded research to better understand the various mutations seen in ECD patients was funded in part as a basic science research project. The findings eventually allowed more targeted treatments to be discovered for many histiocytic patients.<\/p>\n 2) Pesquisa translacional<\/span> takes knowledge learned in basic research to determine how that knowledge might be \u201ctranslated\u201d into clinical care. For instance, when different ECD mutations were found, the translational research projects were able to discover the possible treatments that could be used to target those mutations.<\/p>\n 3) Pesquisa Cl\u00ednica<\/span> looks at increasing the understanding of what works best for patients regarding diagnosis, treatment, and care management. Diagnostic research is important to help patients arrive at a diagnosis early in disease progression when less irreversible damage may have occurred to organs. Treatment and care management research allows an increased understanding of what treatments and care bring about the best outcomes for patients.<\/p>\n Algumas das pesquisas cl\u00ednicas sobre a ECD realizadas at\u00e9 o momento t\u00eam se concentrado n\u00e3o apenas em melhores op\u00e7\u00f5es de diagn\u00f3stico e tratamento em geral, mas tamb\u00e9m em compreender melhor como a ECD afeta diferentes \u00f3rg\u00e3os, principalmente o c\u00e9rebro e o sistema neurol\u00f3gico.<\/p>\n A ECDGA tamb\u00e9m financia, em parte, um Registro de Pacientes com ECD<\/a> which is a database to collect patients\u2019 medical histories in an organized format. This allows information about patients who are seen at many different institutions to be analyzed together in a more holistic way. By analyzing the ECD population, scientists can begin to see patterns and clues that will help understand ECD and hopefully find the most effective treatments in a given circumstance.\u00a0 The ECDGA has also partnered with the National Institute of Health for a Natural History Study of ECD. The collected data continues to be used to further research.<\/p>\n Para garantir que os avan\u00e7os futuros no conhecimento sobre a ECD estejam alinhados com as quest\u00f5es mais relevantes para os pacientes e suas fam\u00edlias, o Conselho Administrativo da ECDGA est\u00e1 atualmente avaliando a possibilidade de financiar projetos de pesquisa baseados nas prioridades dos pacientes e cuidadores, al\u00e9m das pesquisas propostas de acordo com as necessidades da comunidade m\u00e9dica.<\/strong><\/p>\n Para compreender as prioridades e necessidades dos pacientes e de seus familiares, foi elaborado um question\u00e1rio com o objetivo de coletar opini\u00f5es da comunidade. Convidamos todos os pacientes com ECD e seus familiares a preencher e enviar este question\u00e1rio antes de 30 de outubro de 2021<\/strong>.<\/p>\n As informa\u00e7\u00f5es coletadas na pesquisa ser\u00e3o analisadas e discutidas com a comunidade m\u00e9dica especializada em desenvolvimento na primeira inf\u00e2ncia (ECD) para identificar poss\u00edveis projetos de pesquisa que possam gerar conhecimentos que sejam mais significativos para a comunidade.<\/p>\n Caso ainda n\u00e3o tenha feito isso, pedimos que preencha a pesquisa clicando no bot\u00e3o abaixo.<\/p>\n Responda \u00e0 pesquisa<\/a><\/p>\n Saiba mais:<\/p>\n Estudos e ensaios cl\u00ednicos em andamento<\/a> You can play a big part in fighting ECD. If you are a patient or direct caregiver, please participate in this survey by October 30, 2021. Take the Survey When […]<\/p>\n","protected":false},"author":14,"featured_media":19809,"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":[51,70],"tags":[55,54,59,53,58,56,57,122,132,52,130,131],"class_list":["post-19808","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-research-awareness","tag-advocacy","tag-blood-disorder","tag-bone-pain","tag-cancer","tag-diabetes-insipidus","tag-erdheim-chester","tag-hairy-kidney","tag-histio","tag-patient-research","tag-rare-disease","tag-research","tag-survey"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts\/19808","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/comments?post=19808"}],"version-history":[{"count":1,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts\/19808\/revisions"}],"predecessor-version":[{"id":175281,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts\/19808\/revisions\/175281"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/media\/19809"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/media?parent=19808"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/categories?post=19808"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/tags?post=19808"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
\nFinanciamento por meio de subs\u00eddios do ECD<\/a><\/p>","protected":false},"excerpt":{"rendered":"