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Top 10 Research Themes for Dystonia in Cerebral Palsy: A Community-Driven Research Agenda. | LitMetric

Top 10 Research Themes for Dystonia in Cerebral Palsy: A Community-Driven Research Agenda.

Neurology

From the Department of Neurology (L.A.G., B.R.A.), Washington University School of Medicine and St. Louis Children's Hospital, MO; Department of Pediatrics (D.L.F.), University of Toronto and Holland Bloorview Kids Rehabilitation Hospital, Ontario, Canada; Department of Population Health Sciences (P.G., W.K.), University of Utah, Salt Lake City; Departments of Child Health, Neurology, Genetics, and Cellular and Molecular Medicine (M.C.K.), College of Medicine-Phoenix, University of Arizona and Cerebral Palsy and Pediatric Movement Disorders Program, Barrow Neurological Institute, Phoenix Children's Hospital; Department of Neurology (J.W.M.), University of Rochester School of Medicine and Dentistry, NY; and The Cerebral Palsy Research Network (P.G., M.S.), Salt Lake City, UT.

Published: August 2022

AI Article Synopsis

Article Abstract

Dystonia in cerebral palsy (DCP) is a common, debilitating, but understudied condition. The CP community (people with CP and caregivers) is uniquely equipped to help determine the research questions that best address their needs. We developed a community-driven DCP research agenda using the well-established James Lind Alliance methodology. CP community members, researchers, and clinicians were recruited through multiple advocacy, research, and professional organizations. To ensure shared baseline knowledge, participants watched webinars outlining our current knowledge on DCP prepared by a Steering Group of field experts (cprn.org/research-cp-dystonia-edition). Participants next submitted their remaining uncertainties about DCP. These were vetted by the Steering Group and consolidated to eliminate redundancy to generate a list of unique uncertainties, which were then prioritized by the participants. The top-prioritized uncertainties were aggregated into themes through iterative consensus-building discussions within the Steering Group. 166 webinar viewers generated 67 unique uncertainties. 29 uncertainties (17 generated by community members) were prioritized higher than their randomly matched pairs. These were coalesced into the following top 10 DCP research themes: (1) develop new treatments; (2) assess rehabilitation, psychological, and environmental management approaches; (3) compare effectiveness of current treatments; (4) improve diagnosis and severity assessments; (5) assess the effect of mixed tone (spasticity and dystonia) in outcomes and approaches; (6) assess predictors of treatment responsiveness; (7) identify pathophysiologic mechanisms; (8) characterize the natural history; (9) determine the best treatments for pain; and (10) increase family awareness. This community-driven research agenda reflects the concerns most important to the community, both in perception and in practice. We therefore encourage future DCP research to center around these themes. Furthermore, noting that community members (not clinicians or researchers) generated the majority of top-prioritized uncertainties, our results highlight the important contributions community members can make to research agendas, even beyond DCP.

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Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9442618PMC
http://dx.doi.org/10.1212/WNL.0000000000200911DOI Listing

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