Cerebral Palsy (CP) is often defined in part as an early non-progressive brain injury or disturbance in neurological development that impacts the areas of the brain responsible for movement, posture and coordination.  There may be other areas of the brain affected as well. But as adults with lived experience with CP describe, the description of a static brain injury distracts from the reality of the downstream effects that it causes on the body.  The CP Research Network was founded in part to increase the amount of research about adults with CP.  Our patient-centered research agenda, Research CP, that was published in 2018 made clear that adults with CP wanted research to be focused on issues surrounding aging and functional decline.  In 2019, under the leadership of Drs. Mary Gannotti  and Deborah Thorpe, and in collaboration with many adults with lived experience, the CP Research Network launched its Adult Study of Wellbeing and Pain as its first study in our Community Registry.  This longitudinal collection of surveys is intended to capture current health and wellbeing for participating adults with CP and track it over time.   While the vast number of people living with CP are adults, recruiting sufficient numbers and diversity has proven challenging.  But with funding support from Rifton and the American Physical Therapy Association, and in collaboration with the CP Foundation, we have amassed enough participants to begin publishing some preliminary findings.

 

In November 2023, Dr. Cristina Sarmiento, a young investigator in our network and Dr. Gannotti, an investigator focused on adults with CP, published initial findings on chronic pain in adults with CP.   More recently, Drs. Sarmiento and Gannotti published again on the findings related to functional decline in adults with CP in the Disability and Health Journal.   Their analysis shows that functional decline in mobility was the most common symptom reported among the adults surveyed.  Functional decline was most pronounced in Gross Motor Function Classification System levels III and IV.  These findings are just a few of the high-level results described in the article.  The article is available for free viewing until April 21, 2024.  Thanks to Dr. Gannotti for her persistence in recruiting for this study and for mentoring  Dr. Sarmiento and other junior faculty. Together they have turned our data into valuable information for the community and for researchers to understand more about what adults with CP are experiencing with their health and wellbeing.

We want to hear from you!

The adult study of wellbeing and pain mentioned in this blog post is still recruiting and interested participants can learn more or sign up at our community portal: MyCP.org.