Today, we are excited to share a major milestone for the Cerebral Palsy Research Network: the publication of our first study using data from the required and high-priority information collected in our clinical registry. The article, “Characteristics of Individuals With Cerebral Palsy Across the US,” was published in JAMA Network Open,a prestigious journal with a wide audience and is available open access, so anyone can read it without a subscription. Congratulations to Dr. Bhooma Aravamuthan who led the writing of this article with numerous co-authors from the CP Research Network who contributed to the findings.

For many years, much of what we knew about cerebral palsy (CP) came from registries outside the United States or from reviews of medical records collected after care occurred. Those studies have been valuable, but they have not always included details such as a person’s Gross Motor Function Classification System level, or GMFCS, which describe a person’s everyday way of moving around the community, and whether CP may have a genetic cause.

In this study, researchers examined clinician-entered information from 9,756 people with CP at 22 CP Research Network specialty-care sites in 17 states. The sites represented all four U.S. Census regions. Researchers looked at how motor function, movement and muscle tone, gestational age at birth, CP distribution, demographics, and clinician-identified genetic causes were related.

The findings reinforce an important message for the CP community: cerebral palsy is highly diverse. No single pattern describes everyone living with CP.

Spasticity, which is a type of increased tightness or high tone, was the most commonly recorded tone pattern. People with greater gross motor impairment were more likely to have several tone or movement differences occurring together, such as spasticity, dystonia, or hypotonia. Dystonia causes involuntary twisting movements, while hypotonia means lower muscle tone. For families, adults with CP, and care teams, this finding highlights why a complete description of movement patterns may be more useful than relying on one label alone.

Among participants with available gestational-age information, about half had been born premature (or before 37 weeks). The study also identified a contributing genetic cause of CP for 12.2% of people. People with a clinician-identified genetic cause were more likely to have been born at full term and to have hypotonia, ataxia, chorea, or athetosis. These are associations, not a way to determine the cause of CP for any individual. Questions about genetic testing or personal care decisions should be discussed with a qualified care team.

Researchers also found differences in GMFCS levels associated with race and age. The study does not explain why those differences exist, but the findings identify important questions for future work, including questions about access to care, diagnosis, health outcomes, and who is represented in research.

This publication demonstrates the value of a multi-site clinical registry. CP Research Network clinicians collect a common set of information during routine care and update it over time. By bringing together data from many specialty centers, the network can study patterns that would be difficult for any one hospital to examine alone.

The nearly 10,000 registry participants made this the largest U.S. population of people with CP described using data that was entered by a clinician during care. Just as importantly, the study creates a foundation for future research. Knowing who is represented in the registry and how CP characteristics occur together can help researchers ask stronger questions about treatments, function, participation, symptoms, health, and quality of life.

The registry includes people receiving care at specialty centers, so it may not represent every person with CP in the United States. Some information was missing, and recording practices may differ across sites. The study also shows associations between characteristics, but it cannot establish that one characteristic caused another.

Even with these limitations, this first large-scale registry publication offers an important new view of CP in the United States and shows what the CP community, clinicians, and researchers can learn by working together across institutions.

Read “Characteristics of Individuals With Cerebral Palsy Across the US” in JAMA Network Open

This publication is an important first step, and it is only the beginning. Support from the CP community helps the network take this research to the next level. Please consider making a donation to advance future studies and help build knowledge that improves the lives of people with CP.

Source: Aravamuthan BR, et al. Characteristics of Individuals With Cerebral Palsy Across the US. JAMA Network Open. Published September 16, 2026. doi:10.1001/jamanetworkopen.2026.34523.