Cerebral palsy registers around the world: A survey

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.

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.

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.

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.

Cerebral palsy (CP) registers represent an increasing number of regions, including low- and middle-income, worldwide. Most registers collect the minimum data set of a CP register network. Research activities/output and impact are measured by most registers. The majority of registers involve people with lived experience in operation or research.