Tracking Methods for Cerebral Palsy
Cerebral Palsy is a neuromuscular condition that affects thousands of people in the United States and around the world. The Centers for Disease Control and Prevention (CDC) has been studying cerebral palsy since the early 1980s. By tracking the number of children diagnosed with Cerebral Palsy over time, we can find out if the number is rising, dropping, or staying the same. We can compare the number of children with Cerebral Palsy in different groups of people and in different areas of the country. This information can help us look for causes and risk factors of cerebral palsy, evaluate the effectiveness of prevention efforts, raise awareness of the signs and symptoms, and help families and communities plan for services. Determining whether these changes affect the rates of Cerebral Palsy over time requires ongoing, systematic population-based tracking.
Determining How Many People Have Cerebral Palsy—Tracking
CDC tracks the number and characteristics of children with Cerebral Palsy living in several diverse communities across the United States. Communities can use CDC’s information on the number and characteristics of children with Cerebral Palsy, such as subtype, walking ability, and co-occurring conditions, to plan for services, guide policy, and promote full participation in community and family life. Information about the co-occurrence of Cerebral Palsy and other conditions, such as autism spectrum disorder, can also help direct research into shared risk factors and causes.
The following are activities that CDC conducts or funds in order to learn more about the number and characteristics of children with Cerebral Palsy:
Autism and Developmental Disabilities Monitoring (ADDM) Network
Currently, CDC has resumed Cerebral Palsy activities within the ADDM Network, focused on tracking and monitoring Cerebral Palsy at 4 funded sites (Minnesota, Missouri, Utah, and Tennessee), and one CDC-managed site in Georgia (MADDSP). Cerebral Palsy activities were re-established across the ADDM Network in 2023 and will begin to:
Assess a state’s capacity for conducting Cerebral Palsy surveillance.
Pilot surveillance methods for reporting prevalence and early identification of Cerebral Palsy among children aged 4 and 8 in their ADDM Network community.
Report preliminary findings of piloting Cerebral Palsy surveillance and develop recommendations for inclusion of Cerebral Palsy in the surveillance year 2024 activities.
Implement Cerebral Palsy surveillance methodology for surveillance year 2024.
Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP)
MADDSP was established in 1991 to identify children with four disabilities (Cerebral Palsy, hearing loss, intellectual disability, and vision impairment). A fifth disability, autism spectrum disorder, was added to the program in 1996. MADDSP conducts ongoing tracking for developmental disabilities among 4-8- and 16-year-old children living in metropolitan Atlanta. This program has contributed a wealth of information on the characteristics, risk factors, costs, and implications of developmental disabilities, including Cerebral Palsy.
Metropolitan Atlanta Developmental Disabilities Study (MADDS)
CDC studied how many children in metropolitan Atlanta had Cerebral Palsy in the mid-1980s. This project was done as part of the Metropolitan Atlanta Developmental Disabilities Study (MADDS), which studied how common certain disabilities were in 10-year-old children. This study served as the basis for the creation of the Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP).
One of the key findings of this study was that 16% of children acquired Cerebral Palsy more than 28 days after birth. The acquired Cerebral Palsy cases were due to:
Infections, such as meningitis or encephalitis.
Head trauma, for example, from a motor vehicle accident or fall.
Cerebrovascular accidents are bleeding or a blood clot in the brain.
Anoxia or lack of oxygen to the brain.
Low blood sugar.
This ongoing tracking and data collection are essential for better understanding Cerebral Palsy, identifying trends, and taking action to improve prevention and services for individuals with this condition. The CDC continues to play a crucial role in researching and tracking cerebral palsy in the United States.