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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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Formato: | Online Artículo Texto |
Lenguaje: | English |
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Published by Elsevier Inc.
2020
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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 |
author_sort | Miller, Ilene Penn |
collection | PubMed |
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. |
format | Online Article Text |
id | pubmed-7395595 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | Published by Elsevier Inc. |
record_format | MEDLINE/PubMed |
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 |
work_keys_str_mv | AT millerilenepenn raringforchangeconfluenceofscientificdiscoveryandadvocatealignmentwarrantsvitalnewinvestmentsintheepilepsies |