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The critical need to accelerate cerebral palsy research with consumer engagement, global networks, and adaptive designs.
Thomas, Sruthi P; Novak, Iona; Ritterband-Rosenbaum, Anina; Lind, Karin; Webb, Annabel; Gross, Paul; McNamara, Maria.
Afiliación
  • Thomas SP; H. Ben Taub Department of Physical Medicine and Rehabilitation and Departments of Neurosurgery and Pediatrics, Baylor College of Medicine, Houston, TX, USA.
  • Novak I; Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
  • Ritterband-Rosenbaum A; Faculty of Medicine and Health, Specialty of Child and Adolescent Health, Cerebral Palsy Alliance Research Institute, Sydney Medical School, The University of Sydney, Sydney, Australia.
  • Lind K; Elsass Foundation, Charlottenlund, Denmark.
  • Webb A; Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
  • Gross P; Faculty of Medicine and Health, Specialty of Child and Adolescent Health, Cerebral Palsy Alliance Research Institute, Sydney Medical School, The University of Sydney, Sydney, Australia.
  • McNamara M; Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
J Pediatr Rehabil Med ; 17(1): 9-17, 2024.
Article en En | MEDLINE | ID: mdl-38552123
ABSTRACT
The prevalence of cerebral palsy (CP) varies globally, with higher rates and burden of disease in low- and middle-income countries. CP is a lifelong condition with no cure, presenting diverse challenges such as motor impairment, epilepsy, and mental health disorders. Research progress has been made but more is needed, especially given consumer demands for faster advancements and improvements in the scientific evidence base for interventions. This paper explores three strategies to accelerate CP research consumer engagement, global clinical trial networks, and adaptive designs. Consumer engagement involving individuals with lived experience enhances research outcomes. Global clinical trial networks provide efficiency through larger and more diverse participant pools. Adaptive designs, unlike traditional randomized controlled trials, allow real-time modifications based on interim analyses, potentially answering complex questions more efficiently. The establishment of a CP Global Clinical Trials Network, integrating consumer engagement, global collaboration, and adaptive designs, marks a paradigm shift. The Network aims to address consumer-set research priorities. While challenges like ethical considerations and capacity building exist, the potential benefits for consumers, clinicians, researchers, and funding bodies are substantial. This paper underscores the urgency of transforming CP research methodologies for quicker translation of novel treatments into clinical practice to improve quality of life for those with CP.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Parálisis Cerebral / Trastornos Mentales Límite: Humans Idioma: En Revista: J Pediatr Rehabil Med Año: 2024 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Países Bajos
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Parálisis Cerebral / Trastornos Mentales Límite: Humans Idioma: En Revista: J Pediatr Rehabil Med Año: 2024 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Países Bajos