Get started
Author

JayEtta Hecker

FDA Patient-Focused Drug Development Guidances
2023 · Anne T. Berg, Natasha N. Ludwig, et al. · Neurology · 43
PDF
Comorbidities of Rare Epilepsies: Results from the Rare Epilepsy Network
2018 · Nhan Thi Ho, Barbara Kroner, et al. · The Journal of Pediatrics · 35
What does better look like in individuals with severe neurodevelopmental impairments? A qualitative descriptive study on SCN2A-related developmental and epileptic encephalopathy
2023 · Jenny Downs, Natasha N. Ludwig, et al. · Quality of Life Research · 21
PDF
Global modified Delphi consensus on diagnosis, phenotypes, and treatment of SCN8A‐related epilepsy and/or neurodevelopmental disorders
2024 · Gabrielle Conecker, Maya Y. Xia, et al. · Epilepsia · 20
Factors Associated with Caregiver Sleep Quality Related to Children with Rare Epilepsy Syndromes
2020 · Dale C. Hesdorffer, Barbara L. Kroner, et al. · The Journal of Pediatrics X · 19
PDF
Patient-advocate-led global coalition adapting fit-for-purpose outcomes measures to assure meaningful inclusion of DEEs in clinical trials
2024 · JayEtta Hecker, Gabrielle Conecker, et al. · Therapeutic Advances in Rare Disease · 16
Global modified‐Delphi consensus on comorbidities and prognosis of SCN8A ‐related epilepsy and/or neurodevelopmental disorders
2024 · Gabrielle Conecker, Maya Y. Xia, et al. · Epilepsia · 13
Caregiver‐reported meaningful change in functional domains for individuals with developmental and epileptic encephalopathy: A convergent mixed‐methods design
2025 · Jenny Downs, Sophie Haywood, et al. · Developmental Medicine & Child Neurology · 11
PDF
Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorder
2024 · Natasha N. Ludwig, Mary Wojnaroski, et al. · Epilepsy & Behavior · 10
Epilepsy Community at an Inflection Point: Translating Research Toward Curing the Epilepsies and Improving Patient Outcomes
2021 · Ilene Penn Miller, JayEtta Hecker, et al. · Epiliepsy currents/Epilepsy currents · 7
The Feasibility of Personalized Endpoints in Assessing Treatment Outcomes for Rare Diseases: A Pilot Study of Goal Attainment Scaling in SCN2A-Associated Developmental Epileptic Encephalopathy
2024 · Gunes Sevinc, Kari Knox, et al. · Value in Health · 6
PDF
A research roadmap for SCN8A-related disorders: addressing knowledge gaps and aligning research priorities across stakeholders
2025 · Anne T. Berg, Christopher Burge, et al. · Orphanet Journal of Rare Diseases · 5
PDF
Impact of non-seizure outcomes and caregiver priorities for young people with severe neurodevelopmental encephalopathy with or without epilepsy: A community survey
2025 · Anne T. Berg, Mary Wojnaroski, et al. · European Journal of Paediatric Neurology · 4
Parent/caregiver perspectives of meaningful improvement in functional domains for people with CDKL5 deficiency disorder: a mixed-methods study
2025 · Jessica Keeley, Zoe Skoda, et al. · Quality of Life Research · 4
PDF
Caregiver-reported quality of life in individuals with developmental and epileptic encephalopathy and other severe neurodevelopmental encephalopathies
2026 · Natasha N. Ludwig, Melissa K. Licari, et al. · Quality of Life Research · 3
PDF
Validity Data for the Developmental Profile-4 in Individuals With Profound Intellectual and Multiple Disabilities and Developmental Epileptic Encephalopathies
2026 · Mary Wojnaroski, Natasha N. Ludwig, et al. · American Journal on Intellectual and Developmental Disabilities
PDF
From QI-disability to QID-12: creating a brief proxy-report measure of quality of life for children with intellectual disability
2026 · Melissa K. Licari, Andrew J.O. Whitehouse, et al. · Quality of Life Research
PDF
Patient leadership and partnerships accelerate therapies for SCN8A and other developmental and epileptic encephalopathies
2025 · Gabrielle Conecker, JayEtta Hecker, et al. · Therapeutic Advances in Rare Disease
Partnering to support the next generation of epilepsy researchers
2017 · Penny A. Dacks, Sonya B. Dumanis, et al. · Epilepsy & Behavior
Works count: 19
Citation count: 217
H-index: 9
I10-index: 9
Year
Topic
Type