Reading and Resources
Websites
- American Academy of Pediatrics. Helpful Epilepsy Resources for Patients and Families. Last updated August 14, 2024. https://www.aap.org/en/patient-care/epilepsy/managing-pediatric-epilepsy/helpful-epilepsy-resources-for-patients-and-families/
- Centers for Disease Control and Prevention. Managing Epilepsy. May 15, 2024. https://www.cdc.gov/epilepsy/living-with/index.html
- DEE-P Connections. https://deepconnections.net/
- Epilepsy Foundation. Developmental and Epileptic Encephalopathy (DEE). Published March 1, 2021. https://www.epilepsy.com/what-is-epilepsy/syndromes/developmental-and-epileptic-encephalopathy
- National Association of Epilepsy Centers. Patient Resources. https://www.naec-epilepsy.org/for-patients/patient-resources/
- World Health Organization. Epilepsy: a public health imperative. Published June 13, 2019. https://www.who.int/publications/i/item/epilepsy-a-public-health-imperative
Articles and Further Reading
- Aledo-Serrano Á, Mingorance A, Villanueva V, et al. The Charlotte Project: Recommendations for patient-reported outcomes and clinical parameters in Dravet syndrome through a qualitative and Delphi consensus study. Front Neurol. 2022;13:975034. doi:10.3389/fneur.2022.975034
- Balestrini S, Guerrini R, Sisodiya SM. Rare and complex epilepsies from childhood to adulthood: Requirements for separate management or scope for a lifespan holistic approach? Curr Neurol Neurosci Rep. 2021;21:65. doi:10.1007/s11910-021-01154-7
- Beltrán-Corbellini Á, Aledo-Serrano Á, Møller RS, et al. Epilepsy genetics and precision medicine in adults: A new landscape for developmental and epileptic encephalopathies. Front Neurol. 2022;13:777115. doi:10.3389/fneur.2022.777115
- Berg AT, Kaiser K, Dixon-Salazar T, et al. Seizure burden in severe early-life epilepsy: Perspectives from parents. Epilepsia Open. 2019;4(2):293-301. doi:10.1002/epi4.12319
- Crudgington H, Collingwood A, Bray L, et al. Mapping epilepsy-specific patient-reported outcome measures for children to a proposed core outcome set for childhood epilepsy. Epilepsy Behav. 2020;112:107372. doi:10.1016/j.yebeh.2020.107372
- Chen Z, Brodie MJ, Liew D, Kwan P. Treatment outcomes in patients with newly diagnosed epilepsy treated with established and new antiepileptic drugs: A 30-year longitudinal cohort study. JAMA Neurol. 2018;75:279-286. doi:10.1001/jamaneurol.2017.3949
- Guerrini R, Conti V, Mantegazza M, Balestrini S, Galanopoulou AS, Benfenati F. Developmental and epileptic encephalopathies: From genetic heterogeneity to phenotypic continuum. Physiol Rev. 2023;103:433-513. doi:10.1152/physrev.00063.2021
- Kalilani L, Faught E, Kim H, et al. Assessment and effect of a gap between new-onset epilepsy diagnosis and treatment in the US. Neurology. 2019;92:e2197-e2208. doi:10.1212/WNL.0000000000007448
- Nariai H, Duberstein S, Shinnar S. Treatment of epileptic encephalopathies: Current state of the art. J Child Neurol. 201833:41-54. doi:10.1177/0883073817690290
- Raga S, Specchio N, Rheims S, Wilmshurst JM. Developmental and epileptic encephalopathies: Recognition and approaches to care. Epileptic Disord. 2021;23:40-52. doi:10.1684/epd.2021.1244
- Scheffer IE, Dravet C. Transition to adult life in the monogenic epilepsies. Epilepsia. 2014;55(suppl 3):12-15. doi:10.1111/epi.12707
- Sorin LM, Knupp KG, Berg AT. New-onset seizure survey of epilepsy centers in the United States. Epilepsy Behav. 2019;101(Pt A):106579. doi:10.1016/j.yebeh.2019.106579
- Syrbe S. Developmental and epileptic encephalopathies – therapeutic consequences of genetic testing. Med Genet. 2022;34:215-224. doi:10.1515/medgen-2022-2145
- Zack MM, Kobau R. National and state estimates of the numbers of adults and children with active epilepsy – United States, 2015. MMWR Morb Mortal Wkly Rep. 2017;66:821-825. doi:10.15585/mmwr.mm6631a1
All URLs accessed August 17, 2024
