CDC Adds Cerebral Palsy To Autism Tracking Effort
For the first time in over a decade, the Centers for Disease Control and Prevention network that tracks the prevalence of autism is expanding to include another developmental disability.
The agency said that five of its Autism and Developmental Disabilities Monitoring Network sites will start keeping tabs on the incidence of cerebral palsy in their communities in addition to autism.
Cerebral palsy prevalence will be determined using a records review much like the one already in place to monitor autism, CDC officials said. The sites will have a one-year pilot period to establish a case definition, methodology and do other preliminary work before beginning their official data collection in 2024.
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“The new tracking activities will address important data gaps on the prevalence of cerebral palsy among children in the United States, as well as disparities in prevalence and early identification,” said Matt Maenner, chief of the child development and disability branch at the CDC’s National Center on Birth Defects and Developmental Disabilities.
The Autism and Developmental Disabilities Monitoring Network previously tracked cerebral palsy in 8-year-olds, but data on the condition was last collected in 2010. Since that time, there wasn’t enough money available to continue monitoring the condition, officials said.
Now, there is dedicated funding for cerebral palsy surveillance through 2026 and sites in Minnesota, Missouri, Utah, Tennessee and Georgia are expected to collect data on both 4-year-old and 8-year-old children.
“In the time since we’ve last published data, there have been reported decreases in CP prevalence in other high-income countries, but we have no idea whether we will see the same thing in the United States given differences in the populations, health care systems and disparities in risk factors such as preterm birth,” Maenner said.
Currently, the Autism and Developmental Disabilities Monitoring Network has 16 sites tracking autism prevalence. All of the sites review records on children at ages 4 and 8 and nine sites also look at 16-year-olds.
The most recent findings from the monitoring effort were published earlier this year and indicate that 1 in 36 children have autism. That estimate is based on data from 8-year-olds in 2020.
Researchers behind the new cerebral palsy surveillance say they are hopeful that better information about how common the condition is will ultimately lead to earlier diagnosis so that children can access treatment sooner, which leads to better outcomes, and increased availability of services.
“Expanded awareness will be a major benefit, because right now, people don’t often think about cerebral palsy, and earlier intervention is really important,” said Deborah Bilder, an investigator at the University of Utah who’s part of the new effort. “By measuring prevalence, and doing a lot of outreach activities, we will be able to raise awareness about cerebral palsy to improve early cerebral palsy recognition and access to treatment.”
The next data release from the Autism and Developmental Disabilities Monitoring Network is expected in 2025, the CDC said.
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