The Centers for Disease Control and Prevention (CDC) recently announced that it will restart tracking cerebral palsy (CP) cases in the United States.
While the CDC has tracked the incidence of cerebral palsy since the 1980s, lack of funding prevented these efforts in recent years. The last published data was in 2010, and since then, many nations have reported decreased rates of CP incidence. However, the U.S. cannot report the same due to the gaps in knowledge and disparities in health care.
With improved funding, the CDC can resume gathering data about the number of children who are diagnosed with CP each year. This can aid in CP awareness, birth injury and medical malpractice prevention, early diagnosis, and individualized treatment.
For families and children affected by CP, this means more support and better information moving forward.
Need help with your child’s cerebral palsy? Contact our Patient Advocates right now by calling (855) 220-1101.
Why Gathering Cerebral Palsy Data Matters
Having up-to-date cerebral palsy facts is crucial to improving the knowledge base for CP researchers and families of children diagnosed with CP.
Here are some of the most important benefits the new and improved CP data will provide.
Accurate CP Statistics
Tracking the incidence of cerebral palsy will offer up-to-date cerebral palsy statistics. Recent statistics on cerebral palsy are vital for improving research, treatments, and prevention measures.
Birth Injury & Medical Malpractice Prevention
Cerebral palsy is caused by brain damage to a baby’s developing brain either before, during, or after delivery. Unfortunately, this is often a result of preventable birth injuries.
One of the advantages of the new CP tracking program is its ability to uncover differences that affect the health of mothers and infants. This will help emphasize the need for better prenatal care and promote fair access to health care.
The CDC has already issued these alarming findings:
- 1 in 5 women experienced mistreatment during maternity care
- 1 in 3 Black, Hispanic, and multiracial women reported mistreatment
- 45% of expecting mothers didn't ask questions or share concerns during maternity care
The new CP data tracking will be crucial for enhancing the safety of mothers and children, especially in preventing birth injuries and medical malpractice.
If you think your child’s CP could have been prevented, you probably have a lot of unanswered questions. Connect with one of our labor and delivery nurses right now to talk about what may have happened.
Improving CP Diagnosis and Treatment
With better data, medical professionals can develop improved diagnostic tools and treatment strategies by analyzing when and where CP cases occur most frequently.
This targeted approach can lead to earlier diagnoses and more tailored treatments, improving outcomes for people living with cerebral palsy.
Linking Cerebral Palsy Incidence to Risk Factors
One of the goals of all CP research efforts is to help raise awareness of the risk factors for cerebral palsy.
Known risk factors for CP include:
- Brain damage
- Brain hemorrhage
- Family history of CP
- Infant infections
- Kernicterus (often caused by untreated jaundice)
- Lack of oxygen to the brain
- Low birth weight
- Maternal infections
- Premature birth
Knowing the risks linked with cerebral palsy incidence helps health care professionals identify trends.
Understanding CP Across Different Groups
The new data collection efforts for cerebral palsy will involve a wide range of patients from diverse racial, socioeconomic, and geographic backgrounds.
This comprehensive approach aims to uncover possible links between demographics and CP rates, providing valuable insights into the condition's prevalence among different population groups.
For example, if a particular demographic group is found to have a higher incidence of CP, health care providers can focus on early screening and intervention.
Black children are 29% more likely to have CP compared to white and Hispanic children, according to a study by the American Academy of Pediatrics.
Background on CDC Efforts to Track Cerebral Palsy
The improved cerebral palsy tracking comes as an extension of efforts to gather data on autism and other developmental disabilities.
The Autism and Developmental Disabilities Monitoring (ADDM) Network, a branch of the CDC, currently monitors autism spectrum disorder (ASD) data at sites nationwide. Five of these sites will soon begin gathering cerebral palsy statistics in addition to autism.
The main goal is to bridge the data gap on the incidence of cerebral palsy cases. Having accurate statistics is expected to bring many positive changes for children with CP and their families, including increased awareness of CP risk factors and earlier diagnosis and treatment.
When Will the CDC Begin Gathering CP Data?
The ADDM will begin tracking the incidence of cerebral palsy in 2024. However, it is expected to start the project with a one-year pilot period.
During this period, the network will complete important preparation tasks, such as defining cases and establishing methods, before data collection starts.
Funding for CP data tracking is set to last through 2026, while the first set of data should be released in 2025.
How Will the CDC Track CP Cases?
Previously, the CDC tracked CP childhood disability cases in 8-year-old children. The new data will look at both 4-year-old and 8-year-old children.
Characteristics included in the data collection are:
- Number of children with CP
- Types of cerebral palsy (ataxic, athetoid/dyskinetic, mixed, and spastic)
- Walking impairment level
- Co-occurring conditions (ADHD, autism, cancer, epilepsy, intellectual disability)
Tracking the incidence of cerebral palsy and co-occurring conditions is especially important, as this can help researchers identify possible risk factors and treatment approaches.
Locations for Gathering CP Data
Cerebral palsy data collection will take place at five designated ADDM sites in different states.
The 5 sites are located in:
These sites will focus on gathering information related to the causes of cerebral palsy, the various types of CP, and the mobility status of CP patients, in addition to conducting comprehensive surveillance of cerebral palsy cases.
Seeking Support for Cerebral Palsy Care
Navigating the challenges of cerebral palsy can feel overwhelming, but you are not alone. There's a wide network of support, including health care teams and nonprofits, ready to help, especially following a new diagnosis.
Promising new research is also underway to enhance efforts in assisting CP health care professionals. These efforts focus on preventing and diagnosing CP more effectively and ensuring prompt, targeted treatment is available.
Additionally, if your child has cerebral palsy and you suspect medical negligence, financial assistance may be available. Pursuing a cerebral palsy lawsuit can often lead to significant financial help for treatments and therapies.
Cerebral Palsy Guide is dedicated to helping families navigate the cerebral palsy journey with the best possible support and guidance.