Literature DB >> 27558377

Report of a workshop on research gaps in the treatment of cerebral palsy.

Codrin Lungu1, Deborah Hirtz2, Diane Damiano2, Paul Gross2, Jonathan W Mink2.   

Abstract

Cerebral palsy (CP) is heterogeneous in etiology and manifestations, making research into relevant therapies difficult and limiting the generalizability of the results. We report here on the NIH CP symposium, where stakeholders from academic, clinical, regulatory, and advocacy backgrounds discussed the major challenges and needs for moving forward with clinical research in CP, and outlined priorities and action items. New information is constantly generated through research into pathogenesis and etiology. Clinical research and new therapeutic approaches need to keep pace, through large data registry integration and new research designs. Development of standardized data collection, increasing academic focus on CP research, and iterative approaches to treatment throughout the patients' lives, have all been identified as areas of focus. The workshop identified critical gaps and areas of focus to increase the evidence base for therapeutic approaches to determine which treatments work best for which patients in the near future. These include consolidation and optimization of databases and registries, updates to the research methodology, and better integration of resources and stakeholders.
© 2016 American Academy of Neurology.

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Year:  2016        PMID: 27558377      PMCID: PMC5035982          DOI: 10.1212/WNL.0000000000003116

Source DB:  PubMed          Journal:  Neurology        ISSN: 0028-3878            Impact factor:   9.910


  37 in total

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Review 2.  Preterm labor: approach to decreasing complications of prematurity.

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Journal:  Obstet Gynecol Clin North Am       Date:  2015-03-09       Impact factor: 2.844

Review 3.  Cerebral palsy: causes, pathways, and the role of genetic variants.

Authors:  Alastair H MacLennan; Suzanna C Thompson; Jozef Gecz
Journal:  Am J Obstet Gynecol       Date:  2015-05-21       Impact factor: 8.661

Review 4.  A neurocognitive perspective on developmental disregard in children with hemiplegic cerebral palsy.

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Journal:  Res Dev Disabil       Date:  2011-08-05

5.  Common data elements for clinical research in Friedreich's ataxia.

Authors:  David R Lynch; Massimo Pandolfo; Jorg B Schulz; Susan Perlman; Martin B Delatycki; R Mark Payne; Robert Shaddy; Kenneth H Fischbeck; Jennifer Farmer; Paul Kantor; Subha V Raman; Lisa Hunegs; Joanne Odenkirchen; Kristy Miller; Petra Kaufmann
Journal:  Mov Disord       Date:  2012-12-12       Impact factor: 10.338

6.  Australian Cerebral Palsy Child Study: protocol of a prospective population based study of motor and brain development of preschool aged children with cerebral palsy.

Authors:  Roslyn N Boyd; Rachel Jordan; Laura Pareezer; Anne Moodie; Christine Finn; Belinda Luther; Evyn Arnfield; Aaron Pym; Alex Craven; Paula Beall; Kelly Weir; Megan Kentish; Meredith Wynter; Robert Ware; Michael Fahey; Barry Rawicki; Lynne McKinlay; Andrea Guzzetta
Journal:  BMC Neurol       Date:  2013-06-11       Impact factor: 2.474

7.  Safety of Allogeneic Umbilical Cord Blood Stem Cells Therapy in Patients with Severe Cerebral Palsy: A Retrospective Study.

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8.  PEDSnet: a National Pediatric Learning Health System.

Authors:  Christopher B Forrest; Peter A Margolis; L Charles Bailey; Keith Marsolo; Mark A Del Beccaro; Jonathan A Finkelstein; David E Milov; Veronica J Vieland; Bryan A Wolf; Feliciano B Yu; Michael G Kahn
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9.  Launching PCORnet, a national patient-centered clinical research network.

Authors:  Rachael L Fleurence; Lesley H Curtis; Robert M Califf; Richard Platt; Joe V Selby; Jeffrey S Brown
Journal:  J Am Med Inform Assoc       Date:  2014-05-12       Impact factor: 4.497

Review 10.  Stem cell therapy for neonatal hypoxic-ischemic encephalopathy.

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Journal:  Front Neurol       Date:  2014-08-12       Impact factor: 4.003

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2.  Cerebral palsy in Canada, 2011-2031: results of a microsimulation modelling study of epidemiological and cost impacts.

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Journal:  Health Promot Chronic Dis Prev Can       Date:  2020-02       Impact factor: 3.240

3.  Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report.

Authors:  Paul Gross; Mary Gannotti; Amy Bailes; Susan D Horn; Jacob Kean; Unni G Narayanan; Jerry Oakes; Garey Noritz
Journal:  Arch Rehabil Res Clin Transl       Date:  2020-04-19

4.  Motivators and barriers to research participation for individuals with cerebral palsy and their families.

Authors:  Kristina M Zvolanek; Vatsala Goyal; Alexandra Hruby; Carson Ingo; Theresa Sukal-Moulton
Journal:  PLoS One       Date:  2022-01-26       Impact factor: 3.240

Review 5.  A Bibliometric and Visualization Analysis of Motor Learning in Preschoolers and Children over the Last 15 Years.

Authors:  Fei Xu; Jing Xu; Daliang Zhou; Hao Xie; Xuan Liu
Journal:  Healthcare (Basel)       Date:  2022-07-28
  5 in total

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