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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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Information & Authors

Information

Published In

Neurology®
Volume 99Number 6August 9, 2022
Pages: 237-245
PubMed: 35715199

Publication History

Received: October 23, 2021
Accepted: May 16, 2022
Published online: June 17, 2022
Published in print: August 9, 2022

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Disclosure

P. Gross has received research support from the University of Utah and is a site principal investigator for a National Institute of Neurological Disorders and Stroke–funded study (5R01NS106298-03). M.C. Kruer serves as a consultant for Aeglea, PTC Therapeutics, CoA Therapeutics, and Merz, reviews grants for the US Department of Defense, and receives grant funding from the National Institute of Neurological Disorders and Stroke (R01-NS106298-02). J.W. Mink serves on an independent Data and Safety Monitoring Board for a study in “Dyskinetic CP” sponsored by TEVA. B.R. Aravamuthan serves as a consultant for Neurocrine Biosciences and receives grant funding from the National Institute of Neurological Disorders and Stroke (5K12NS098482-02 and 1K08NS117850-01A1). All other authors report no disclosures relevant to the manuscript. Go to Neurology.org/N for full disclosures.

Study Funding

No targeted funding reported.

Authors

Affiliations & Disclosures

Laura A. Gilbert, DO, MBA
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.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Darcy L. Fehlings, MD, MSc
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.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
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.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Michael C. Kruer, MD
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.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Wendy Kwan, BS
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.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Jonathan W. Mink, MD, PhD, FAAN
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.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Michele Shusterman, BA
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.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Bhooma R. Aravamuthan, MD, DPhil https://orcid.org/0000-0003-0205-2149
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.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
and the Cerebral Palsy Research Network Dystonia Study Group
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.

Notes

Correspondence Dr. Aravamuthan [email protected]
Go to Neurology.org/N for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.
Submitted and externally peer reviewed. The handling editor was Peter Hedera, MD, PhD.

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  4. Determinants of gait dystonia severity in cerebral palsy, Developmental Medicine & Child Neurology, 65, 7, (968-977), (2023).https://doi.org/10.1111/dmcn.15524
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