Cargando…
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...
Autor principal: | |
---|---|
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 |
Sumario: | • 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. |
---|