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Raring for change: Confluence of scientific discovery and advocate alignment warrants vital new investments in The Epilepsies

• The Epilepsies’ landscape has dramatically changed with increased rare epilepsy diagnoses, organizations, and therapeutic targets. • Many rare epilepsies lack standardized clinical guidelines and cures and interventions to improve developmental outcomes and quality of life. • The Rare Epilepsy Lan...

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Autor principal: Miller, Ilene Penn
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Published by Elsevier Inc. 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7395595/
https://www.ncbi.nlm.nih.gov/pubmed/32759063
http://dx.doi.org/10.1016/j.yebeh.2020.107276
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author Miller, Ilene Penn
author_facet Miller, Ilene Penn
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description • The Epilepsies’ landscape has dramatically changed with increased rare epilepsy diagnoses, organizations, and therapeutic targets. • Many rare epilepsies lack standardized clinical guidelines and cures and interventions to improve developmental outcomes and quality of life. • The Rare Epilepsy Landscape Analysis (RELA) was a first-of-its-kind qualitative analysis of 44 rare epilepsy organizations. • Common challenges emerged around multi-disciplinary care access, population burden, and research funding commensurate with opportunities. • Consensus among Rares to develop Rare Epilepsy Centers of Excellence, a National Epilepsy Registry, and new paradigms and funding for research.
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spelling pubmed-73955952020-08-03 Raring for change: Confluence of scientific discovery and advocate alignment warrants vital new investments in The Epilepsies Miller, Ilene Penn Epilepsy Behav Editorial • The Epilepsies’ landscape has dramatically changed with increased rare epilepsy diagnoses, organizations, and therapeutic targets. • Many rare epilepsies lack standardized clinical guidelines and cures and interventions to improve developmental outcomes and quality of life. • The Rare Epilepsy Landscape Analysis (RELA) was a first-of-its-kind qualitative analysis of 44 rare epilepsy organizations. • Common challenges emerged around multi-disciplinary care access, population burden, and research funding commensurate with opportunities. • Consensus among Rares to develop Rare Epilepsy Centers of Excellence, a National Epilepsy Registry, and new paradigms and funding for research. Published by Elsevier Inc. 2020-10 2020-08-01 /pmc/articles/PMC7395595/ /pubmed/32759063 http://dx.doi.org/10.1016/j.yebeh.2020.107276 Text en © 2020 Published by Elsevier Inc. Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.
spellingShingle Editorial
Miller, Ilene Penn
Raring for change: Confluence of scientific discovery and advocate alignment warrants vital new investments in The Epilepsies
title Raring for change: Confluence of scientific discovery and advocate alignment warrants vital new investments in The Epilepsies
title_full Raring for change: Confluence of scientific discovery and advocate alignment warrants vital new investments in The Epilepsies
title_fullStr Raring for change: Confluence of scientific discovery and advocate alignment warrants vital new investments in The Epilepsies
title_full_unstemmed Raring for change: Confluence of scientific discovery and advocate alignment warrants vital new investments in The Epilepsies
title_short Raring for change: Confluence of scientific discovery and advocate alignment warrants vital new investments in The Epilepsies
title_sort raring for change: confluence of scientific discovery and advocate alignment warrants vital new investments in the epilepsies
topic Editorial
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7395595/
https://www.ncbi.nlm.nih.gov/pubmed/32759063
http://dx.doi.org/10.1016/j.yebeh.2020.107276
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