AIM This study describes the process of updating the cerebral palsy (CP) common data elements (CDEs), specifically identifying tools that capture the impact of chronic pain on children's functioning. METHOD Through a partnership between the American Academy for Cerebral Palsy and Developmental Medicine and the National Institute of Neurological Disorders and Stroke (NINDS), the CP CDEs were developed as data standards for clinical research in neuroscience. Chronic pain was underrepresented in the NINDS CP CDEs version 1.0. A multi-step methodology was applied by an interdisciplinary professional team. Following an adapted CP chronic pain tools' rating system, and a review of psychometric properties, clinical utility, and compliance with inclusion/exclusion criteria, a set of recommended pain tools was posted online for external public comment in May 2022. RESULTS Fifteen chronic pain tools met inclusion criteria, representing constructs across all components of the International Classification of Functioning, Disability and Health. INTERPRETATION This paper describes the first condition-specific pain CDEs for a pediatric population. The proposed set of chronic pain tools complement and enhance the applicability of the existing pediatric CP CDEs. The novel CP CDE pain tools harmonize the assessment of chronic pain, addressing not only intensity of chronic pain, but also the functional impact of experiencing it in everyday activities.

中文翻译：

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脑瘫疼痛仪器：国家神经疾病和中风脑瘫通用数据元素项目推荐的临床研究工具。

目的 本研究描述了脑瘫 (CP) 通用数据元素 (CDE) 的更新过程，特别是确定了捕捉慢性疼痛对儿童功能影响的工具。方法 通过美国脑瘫和发育医学学会与国家神经疾病和中风研究所 (NINDS) 之间的合作，CP CDE 被开发为神经科学临床研究的数据标准。慢性疼痛在 NINDS CP CDE 1.0 版中代表性不足。跨学科专业团队采用了多步骤方法。经过改编的 CP 慢性疼痛工具评级系统，并对心理测量特性、临床实用性以及纳入/排除标准的遵守情况进行审查后，一组推荐的疼痛工具于 2022 年 5 月在线发布以征询外部公众意见。 结果 15 种慢性疼痛工具符合纳入标准，代表了国际功能、残疾和健康分类所有组成部分的结构。解释本文描述了第一个针对儿科人群的特定情况疼痛 CDE。拟议的一套慢性疼痛工具补充并增强了现有儿科 CP CDE 的适用性。新型 CP CDE 疼痛工具协调了慢性疼痛的评估，不仅解决了慢性疼痛的强度，还解决了日常活动中经历慢性疼痛的功能影响。