日期:
2020 年 — 2026 年
2020
2021
2022
2023
2024
2025
2026
影响因子:

From QI-disability to QID-12: creating a brief proxy-report measure of quality of life for children with intellectual disability

从 QI-disability 到 QID-12:为智力障碍儿童创建简短的生活质量代理报告测量工具

Licari, Melissa K; Whitehouse, Andrew J O; Ludwig, Natasha N; Wojnaroski, Mary; Hommer, Rebecca; Conecker, Gabrielle; Hecker, JayEtta; Muzyczka, Kelly; Leonard, Helen; Williams, Katrina J; Reddihough, Dinah S; Downs, Jenny; Jacoby, Peter

Caregiver-reported quality of life in individuals with developmental and epileptic encephalopathy and other severe neurodevelopmental encephalopathies

照护者报告的发育性脑病、癫痫性脑病和其他严重神经发育性脑病患者的生活质量

Ludwig, Natasha N; Licari, Melissa K; Wojnaroski, Mary; Conecker, Gabrielle; Hecker, JayEtta; Hommer, Rebecca; Muzyczka, Kelly; Jacoby, Peter; Downs, Jenny

Caregiver-reported meaningful change in functional domains for individuals with developmental and epileptic encephalopathy: A convergent mixed-methods design

照护者报告的发育性和癫痫性脑病患者功能领域的重要变化:一项融合混合方法设计

Downs, Jenny; Haywood, Sophie; Ludwig, Natasha N; Wojnaroski, Mary; Hommer, Rebecca; Muzyczka, Kelly; Hecker, JayEtta; Conecker, Gabrielle; Keeley, Jessica; Berg, Anne T

Parent/caregiver perspectives of meaningful improvement in functional domains for people with CDKL5 deficiency disorder: a mixed-methods study

父母/照护者对 CDKL5 缺乏症患者功能领域显著改善的看法:一项混合方法研究

Keeley, Jessica; Skoda, Zoe; Utley, Karen; Marsh, Eric D; Conecker, Gabrielle A; Hecker, JayEtta; Ludwig, Natasha N; Leonard, Helen; Saldaris, Jacinta; Jacoby, Peter; Pincus, Sharon; Benke, Tim A; Demarest, Scott T; Downs, Jenny

Mobilizing a New Era in Lennox-Gastaut Syndrome Treatment and Prevention

开启Lennox-Gastaut综合征治疗和预防的新时代

Warren, Aaron E L; Patel, Anup D; Helen Cross, J; Clarke, Dave F; Dalic, Linda J; Grinspan, Zachary M; Conecker, Gabrielle; Knowles, Juliet K

Patient leadership and partnerships accelerate therapies for SCN8A and other developmental and epileptic encephalopathies

患者主导和合作加速了SCN8A及其他发育性和癫痫性脑病的治疗。

Conecker, Gabrielle; Hecker, JayEtta; Hammer, Michael F

What does better look like in individuals with severe neurodevelopmental impairments? A qualitative descriptive study on SCN2A-related developmental and epileptic encephalopathy

对于患有严重神经发育障碍的个体而言,更好的状态是什么样的?一项关于SCN2A相关发育性和癫痫性脑病的定性描述性研究

Downs, Jenny; Ludwig, Natasha N; Wojnaroski, Mary; Keeley, Jessica; Schust Myers, Leah; Chapman, Chere A T; Hecker, JayEtta; Conecker, Gabrielle; Berg, Anne T

Patient-advocate-led global coalition adapting fit-for-purpose outcomes measures to assure meaningful inclusion of DEEs in clinical trials

由患者权益倡导者领导的全球联盟正在调整适用的结果指标,以确保将糖尿病、癫痫和癫痫患者(DEE)有意义地纳入临床试验。

Hecker, JayEtta; Conecker, Gabrielle; Chapman, Chere; Hommer, Rebecca; Ludwig, Natasha N; Sevinc, Gunes; Te, Sara; Wojnaroski, Mary; Downs, Jenny; Berg, Anne T

Cost analysis and provider preferences of low-dose, high-frequency approach to in-service training programs in Uganda

乌干达在职培训项目低剂量、高频率方法的成本分析及提供者偏好

Willcox, Michelle; LeFevre, Amnesty; Mwebaza, Enid; Nabukeera, Josephine; Conecker, Gabrielle; Johnson, Peter