Cerebral palsy (CP) is often described as the most common physical disability of childhood. While survival may be affected, it is inevitable that most people will spend many more years as an adult with CP than they did as a child with CP. What then do we know about the experience of adults living and aging with CP: their social and workplace participation, mental and physical health, function over time, and, ultimately, survival? It is heartening that the exponential increase in childhood CP research in recent decades is beginning to extend into a research focus for adults with the condition. Studies include descriptions of living arrangements, personal assistance needs, employment, 1 gait deterioration, 2 chronic conditions, and multiple morbidity. 3 However, most studies necessarily use small, convenience samples and, therefore, care must be taken with generalization of the findings. Given the geographic movement and myriad commitments of adults, identifying and recruiting a total (or representative) population of adults with CP is extremely difficult. In the absence of rigorous studies of total populations of adults, extrapolation from populations of children is sometimes used to estimate the current adult population and their health care needs.However, Jonsson et al.'s new study from the renowned CP register of Western Sweden is one of the first to explicitly include a population of surviving adults with CP, born between 1959 and 1978. 4 It yields important clinical insights by comparing the registered data from this population of surviving adults with their original cohort registered in childhood and with a modern cohort. The study found that fewer surviving adults had tetraplegia or dyskinetic CP, severe motor impairment, or associated impairments (all measured at age 4-8y) compared to the original and the modern cohorts. This was attributed respectively to decreased survival of children with severe disability and health care changes altering the constitution of CP cohorts over time. The study provides valuable estimates of a total population of adults with CP and presents evidence to discourage the practice of extrapolating data from one population of children to a different group of adults.However, as acknowledged by the authors, what remains unknown is a clinical description of a population of surviving adults with CP as they present in adulthood. Data in the current study were recorded when the original cohort was aged 4 to 8 years, but at least 25% of adults with CP will experience a decline in mobility. 2 Adults with CP describe accelerated changes in their bodies and increased fatigue with aging. 5 They report that acceptance and management of these changes is required, by altering activities, the environment, equipment use, and social and work commitments. 5 In addition to registers providing a 'snapshot' of cohorts of children with confirmed CP in early childhood, they offer an opportunity to determine an accurate clinical description of the population of adults surviving with CP. Some total popu...