Literature DB >> 31760991

Registry-based Research in Cerebral Palsy: The Cerebral Palsy Research Network.

Edward A Hurvitz1, Paul H Gross2, Mary E Gannotti3, Amy F Bailes4, Susan D Horn5.   

Abstract

Registries are a powerful tool for clinical research. Clinical registries for cerebral palsy can aid in comparative effectiveness research, especially using the practice-based evidence model. The Cerebral Palsy Research Network (CPRN) was initiated in 2014 as a patient-centered, multidisciplinary registry. The leadership group initiated a 4-stage participatory action research process: listen, reflect, plan/analyze, and take action. CPRN also joined with CP NOW, an advocacy group, to create a research agenda for cerebral palsy. With more than 20 centers and growing, CPRN hopes to generate evidence for developing best practices and measure their implementation and impact for individuals with cerebral palsy throughout North America.
Copyright © 2019 Elsevier Inc. All rights reserved.

Entities:  

Keywords:  Cerebral palsy; Cerebral palsy research network; Comparative effectiveness research; Registry

Mesh:

Year:  2019        PMID: 31760991     DOI: 10.1016/j.pmr.2019.09.005

Source DB:  PubMed          Journal:  Phys Med Rehabil Clin N Am        ISSN: 1047-9651            Impact factor:   1.784


  4 in total

1.  Variability in Cerebral Palsy Diagnosis.

Authors:  Bhooma R Aravamuthan; Darcy Fehlings; Sheetal Shetty; Michael Fahey; Laura Gilbert; Ann Tilton; Michael C Kruer
Journal:  Pediatrics       Date:  2021-01-05       Impact factor: 7.124

2.  Data integration in cardiac electrophysiology ablation toward achieving proper interoperability in health information systems.

Authors:  Hadi Kazemi-Arpanahi; Mostafa Shanbehzadeh; Esmat Mirbagheri; Abdolvahab Baradaran
Journal:  J Educ Health Promot       Date:  2020-10-30

3.  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

4.  PONT: A Protocol for Online Neuropsychological Testing.

Authors:  William Saban; Richard B Ivry
Journal:  J Cogn Neurosci       Date:  2021-10-01       Impact factor: 3.225

  4 in total

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