Tracking Methods for Cerebral Palsy

Why data is being collected

By tracking the number of children diagnosed with CP over time, it is possible to find out if the number is rising, dropping, or staying the same. We can compare the number of children with CP in different groups of people and in different areas of the country.

The more information there is about children with CP in different groups and in different areas of the country, the better we can do the following:

• Help identify causes and risk factors of CP
• Evaluate the effectiveness of prevention efforts
• Raise awareness of the signs and symptoms
• Help families and communities plan for services

What CDC is doing

CDC has been studying CP since the early 1980s. CDC tracks the number and characteristics of children with CP living in several diverse communities across the United States. Communities can use CDC's information on the number and characteristics of children with CP, 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 CP and other conditions, such as autism spectrum disorder, can also help direct research into shared risk factors and causes.

Below is a brief overview of the programs that CDC has or continues to support to help us learn more about the number and characteristics of children with CP in the United States.

CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network

CDC has resumed CP activities within the ADDM Network, focused on tracking and monitoring CP at 4 funded sites (Minnesota, Missouri, Utah, and Tennessee), and one CDC-managed site in Georgia (MADDSP).

CP activities were re-established across the ADDM Network in 2023 and will begin to:

• Assess a state's capacity for conducting CP surveillance.
• Pilot surveillance methods for reporting prevalence and early identification of CP among children aged 4 and 8 in their ADDM Network community.
• Report preliminary findings of piloting CP surveillance and develop recommendations for inclusion of CP in surveillance year 2024 activities.
• Implement CP surveillance methodology for surveillance year 2024.

Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP)

MADDSP was established in 1991 to identify children with four disabilities (CP, 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 the metropolitan Atlanta area. This program has contributed a wealth of information on the characteristics, risk factors, costs, and implications of developmental disabilities, including CP.

Metropolitan Atlanta Developmental Disabilities Study (MADDS)

CDC began looking at how many children in metropolitan Atlanta had CP 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 Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP).

One of the key findings of this study was that 16% of children acquired CP more than 28 days after birth. The acquired CP cases were due to the following:

• Infections, such as meningitis or encephalitis
• Head trauma, for example, from a motor vehicle accident or fall
• Cerebrovascular accidents, that is, bleeding or a blood clot in the brain
• Anoxia or lack of oxygen to the brain
• Low blood sugar