2025 American Academy of Neurology Abstract Website

Sydney Bitting¹, Amy Tao², Erin Friel³, Jasmin Rivero-Guerra³, Davis Hobley², Selena Xiang², Rachel Batchelor⁴, Shria Ajay², Athena Apaga², Daniel Choi², Rebekah Choi², Gabriela de Jesus Rios², Larry Ejiofor², Judy Gao², Jasmine Hao², Daniel Kim², Angelica Lappay², Jason Lu², Zaighum Nagra², Patricia Okoye², Aarane Ratnaseelan⁵, Chloe Riche², Karina Saba³, Diana Stinkova², Kathleen Tang², Luiza Weissmann³, Emily Yeow², Maya Ragavan³, Christina Briscoe Abath⁶, Laura Kirkpatrick³
¹Northeast Ohio Medical University, ²Princeton University, ³University of Pittsburgh, ⁴Worcester College - University of Oxford, ⁵UPMC Children's Hospital of Pittsburgh, ⁶Boston Children's Hospital

Objective:

To understand the prevalence of community-engaged research in high-impact general neurology journals that publish clinical research.

Background:

Community-engaged research (CER) involves people directly affected by research studies (such as patients and caregivers) in research governance and decision-making rather than only as research participants. CER has been promoted as a more equitable and ethical model of research. Little is known about the uptake of CER in neurology, particularly in high-visibility journals.

Design/Methods:

We manually screened original clinical research articles published from 2012-2022 in four journals (Neurology, Annals of Neurology, JAMA Neurology, and Lancet Neurology) for keywords suggestive of CER, using methods described elsewhere by Ragavan et al. The senior investigator reviewed all articles that flagged positive for CER keywords to determine if and how CER was reported.

Results:

We screened 6849 articles and 779 included CER keywords in the Methods section. Of those, 35 (0.5%) reported CER. The most common methods of community engagement included incorporation of patients or caregivers on advisory boards or steering committees (n=17, 49%), community member involvement in culturally tailoring and delivering interventions (n=4, 11%), and community member involvement in designing and testing psychometric instruments (n=4, 11%). Most common diseases under investigation were dementia (n=11, 31%), stroke (n=6, 17%), and muscular dystrophy (n=6, 17%). Most common study designs included clinical trials (n=13, 27%), cohort studies (n=9, 26%), and cross-sectional studies (n=9, 26%). Only one (3%) study reported including children or youth in research governance though nine (26%) included children as participants with three (9%) recruiting children only. One (3%) study was published from 2012-2014, 8 (23%) studies from 2015-2017, 9 (26%) studies from 2018-2020, and 17 (50%) studies from 2021-2022.

Conclusions:

Few articles published in high-impact general neurology journals explicitly report CER though the frequency of publication of such articles appears to be increasing over time.