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Abstract Details

Needles in Haystacks: A Cross-Sectional Study of Community-Engaged Research in High-Impact General Neurology Journals
好色先生, Research, and Methodology
P12 - Poster Session 12 (11:45 AM-12:45 PM)
5-020
To understand the prevalence of community-engaged research in high-impact general neurology journals that publish clinical research.
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.
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.

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.
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.
Authors/Disclosures
Sydney Bitting
PRESENTER 		Miss Bitting has nothing to disclose.
Amy K. Tao Ms. Tao has nothing to disclose.
Erin Friel Miss Friel has nothing to disclose.
Jasmin Rivero-Guerra, Student-Worker Ms. Rivero-Guerra has nothing to disclose.
Davis C. Hobley Mr. Hobley has nothing to disclose.
Selena Y. Xiang Ms. Xiang has nothing to disclose.
Rachel Batchelor Miss Batchelor has nothing to disclose.
Shria Ajay Ms. Ajay has nothing to disclose.
Athena Alexynne M. Apaga Miss Apaga has nothing to disclose.
Daniel Choi Mr. Choi has nothing to disclose.
Rebekah Y. Choi Miss Choi has nothing to disclose.
Gabriela I. De Jesus, College Student Ms. De Jesus has nothing to disclose.
Larry Ejiofor Mr. Ejiofor has nothing to disclose.
Judy Y. Gao, AB (in progress) Miss Gao has nothing to disclose.
Jasmine Hao Miss Hao has nothing to disclose.
Daniel H. Kim Mr. Kim has nothing to disclose.
Angelica Lappay Miss Lappay has nothing to disclose.
Jason Lu Mr. Lu has nothing to disclose.
Zaighum Nagra Mr. Nagra has nothing to disclose.
Trixie Okoye Ms. Okoye has nothing to disclose.
Aarane Ratnaseelan Ms. Ratnaseelan has nothing to disclose.
Chloe Riche Ms. Riche has nothing to disclose.
Karina Saba Ms. Saba has nothing to disclose.
Diana Stinkova, Bachelor's Degree of Science Ms. Stinkova has nothing to disclose.
Kathleen Tang Miss Tang has nothing to disclose.
Luiza Weissmann Ms. Weissmann has nothing to disclose.
Emily Yeow Ms. Yeow has nothing to disclose.
Maya I. Ragavan The institution of Dr. Ragavan has received research support from National Institutes of Health .
Christina Briscoe Abath, MD The institution of Dr. Briscoe Abath has received research support from Harvard Medical School. Dr. Briscoe Abath has a non-compensated relationship as a Board of Trustees Member with Brother's Brother Foundation that is relevant to AAN interests or activities. Dr. Briscoe Abath has a non-compensated relationship as a Professional Advisory Board with Epilepsy Foundation that is relevant to AAN interests or activities.
Laura A. Kirkpatrick, MD (UPMC Children's Hospital of Pittsburgh) The institution of Dr. Kirkpatrick has received research support from American Epilepsy Society. The institution of Dr. Kirkpatrick has received research support from Child Neurologist Career Development Program. The institution of Dr. Kirkpatrick has received research support from Child Neurology Foundation. The institution of Dr. Kirkpatrick has received research support from Rosenau Family Research Foundation. The institution of Dr. Kirkpatrick has received research support from Society of Family Planning. The institution of Dr. Kirkpatrick has received research support from Pediatric Epilepsy Research Consortium. Dr. Kirkpatrick has received personal compensation in the range of $500-$4,999 for serving as a Meeting Attendee with One8 Foundation. Dr. Kirkpatrick has received personal compensation in the range of $500-$4,999 for serving as a Meeting Attendee with Brigham and Women's Hospital. Dr. Kirkpatrick has received personal compensation in the range of $0-$499 for serving as a Meeting Attendee with Pediatric Epilepsy Research Consortium. Dr. Kirkpatrick has received personal compensation in the range of $0-$499 for serving as a Grant reviewer with Society of Family Planning. Dr. Kirkpatrick has received personal compensation in the range of $500-$4,999 for serving as a Speaker with Norton Children's Hospital. Dr. Kirkpatrick has a non-compensated relationship as a Board of Directors member with My Epilepsy Story that is relevant to AAN interests or activities.