AIM To provide a description of cerebral palsy (CP) registers globally, identify which aim to report on CP epidemiology, and report similarities and differences across topics of importance for the sustainability and collaboration between registers. METHOD Representatives of all known CP registers globally (n = 57) were invited to participate. The online survey included 68 questions across aims, methodologies, output/impact, and stakeholder involvement. Responses were analysed using descriptive statistics. RESULTS Forty-five registers participated, including three register networks. Twenty were newly established or under development, including 12 in low- and middle-income countries (LMICs). An epidemiological aim was reported by 91% of registers. Funding is received by 85% of registers, most often from not-for-profit organizations. CP definitions are comparable across registers. While the minimum data set of a register network is used by most registers, only 25% of identified items are collected by all three register networks. Ninety per cent of registers measure research activities/output, and 64% measure research impact. People with lived experience are involved in 62% of registers. INTERPRETATION There has been a recent surge in CP registers globally, particularly in LMICs, which will improve understanding of CP epidemiology. Ongoing efforts to address identified methodological differences are essential to validate comparison of results and support register collaboration.

中文翻译：

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世界各地的脑瘫登记情况：一项调查。

目的 提供全球脑瘫 (CP) 登记册的描述，确定哪些登记册旨在报告 CP 流行病学，并报告对于登记册之间的可持续性和合作至关重要的主题之间的相似性和差异。方法 全球所有已知 CP 注册机构的代表 (n = 57) 应邀参加。在线调查包括 68 个问题，涉及目标、方法、产出/影响和利益相关者参与。使用描述性统计分析响应。结果 45 个注册机构参与其中，其中包括三个注册网络。20 个是新成立或正在开发的，其中 12 个位于低收入和中等收入国家 (LMIC)。91% 的登记者报告了流行病学目标。85% 的登记机构获得资金，大部分来自非营利组织。CP 定义在寄存器之间具有可比性。虽然大多数登记册使用登记网络的最小数据集，但所有三个登记网络仅收集 25% 的已识别项目。90% 的登记册衡量研究活动/产出，64% 的登记册衡量研究影响。62% 的登记册涉及有生活经验的人。解读 最近全球范围内，尤其是中低收入国家，脑瘫登记人数激增，这将增进对脑瘫流行病学的了解。持续努力解决已发现的方法差异对于验证结果比较和支持登记协作至关重要。