Identification and recruitment of people with cerebral palsy to research studies

Cerebral palsy (CP) is a lifelong condition that primarily affects posture and movement. People with CP often require physical therapy across the lifespan, although until recently, much of the research on the condition focused on interventions in childhood. The best information about numbers and needs of people with CP comes from population-based registers as routinely collected healthcare data have been shown to be unsatisfactory in identifying cases. However, not all countries or regions have CP registers and the ethics and governance arrangements for such registers may preclude their use for recruitment to research. This Indaba session will explore the benefits and challenges in use of CP registers as a sampling frame for research across the lifespan. It will seek tailored solutions that might enable successful recruitment of people with CP to research.