迫切需要通过消费者参与、全球网络和适应性设计来加快脑瘫研究。

IF 0.8 Q4 PEDIATRICS Journal of pediatric rehabilitation medicine Pub Date : 2024-01-01 DOI:10.3233/PRM-240014
Sruthi P Thomas, Iona Novak, Anina Ritterband-Rosenbaum, Karin Lind, Annabel Webb, Paul Gross, Maria McNamara
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引用次数: 0

摘要

全球脑瘫(CP)的发病率各不相同,中低收入国家的发病率更高,疾病负担更重。脑瘫是一种终生无法治愈的疾病,会带来各种挑战,如运动障碍、癫痫和心理健康障碍。研究已经取得了进展,但还需要更多的努力,特别是考虑到消费者要求更快的进步和改善干预措施的科学证据基础。本文探讨了加速 CP 研究的三种策略:消费者参与、全球临床试验网络和适应性设计。让具有实际经验的个人参与消费者参与,可提高研究成果。全球临床试验网络通过更大、更多样化的参与者库提高效率。与传统的随机对照试验不同,适应性设计允许根据中期分析进行实时修改,从而可能更有效地回答复杂的问题。CP 全球临床试验网络的建立将消费者参与、全球合作和适应性设计融为一体,标志着一种模式的转变。该网络旨在解决消费者设定的研究重点。虽然还存在伦理考虑和能力建设等挑战,但消费者、临床医生、研究人员和资助机构的潜在利益是巨大的。本文强调了转变 CP 研究方法的紧迫性,以便更快地将新疗法转化为临床实践,从而提高 CP 患者的生活质量。
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The critical need to accelerate cerebral palsy research with consumer engagement, global networks, and adaptive designs.

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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来源期刊
CiteScore
2.30
自引率
5.30%
发文量
139
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