Purpose: Motor impairments in cerebral palsy (CP) can disrupt communication and eating. CP registries were asked for communication and eating definitions and data collection methods. Methods: CP registries staff answered a 21-question survey. Questions included the types of communication and eating data collected (if any), frequency of collection, registries' operational definitions, and reasons for data not being collected.Results: Twenty-five of 26 active CP registries responded to the survey. Lack of resources, outside the registry's purpose, and lack of available instruments or data sources were reasons given for no data collection. Most registries' data collection occurred once when children were five-years-old or younger. Communication and eating definitions varied by registries, but most definitions focused on underlying hearing, speech, language, eating, and swallowing skills as well as assistive technology use. Hearing data were collected by 96% (n=25 registries); speech data were collected by 85% (n=22 registries); eating data were collected by 65% (n=17 registries); and language data were collected by 42% (n=11 registries). Conclusions: To compare or pool data across population-based CP registries, definitions of communication, speech, language, hearing, and eating should be standardized and a consensus minimal data set for communication and eating established. The frequency and timing of data collection need to be explicitly considered in surveillance and clinical research. A working group of CP registry staff and communication and eating clinical researchers should be convened to standardize definitions and data collection methods.
Read
