The Cerebral Palsy Research Network (CPRN) launched its first study of adults with cerebral palsy (CP) today. The study is open to anyone with CP that is 18-years-old or older and is available on the web at https://mycerebralpalsy.org. The study consists of a series of surveys about an individual’s health, motor abilities, social and emotional health, and experience with chronic pain. It should take approximately 20 minutes to complete. The study of adults with CP was a key priority that was identified in the National Institutes of Health Strategic Plan for Cerebral Palsy (link) that was released in October 2017.
“The quickest way to get information about the issues adults with cerebral palsy are facing with aging, including functional changes, stigma, pain impact and pain treatments that work, is to ask adults with cerebral palsy,” said Mary Gannotti, PT, PhD, and co-chair of the CPRN Adult Study Panel. “We are thrilled to have MyCerebralpasly.org launch these surveys!” she added, “and we hope to people post their thoughts or comments about these topics on the website comments page!”
The adult study was designed by a panel of expert clinician researchers who treat adults with CP. The CPRN Community Advisory Committee provided input into the development of these studies. The Research CP initiative ranked the study of adults with CP as the highest priority research area and we are excited to launch this foundational study to address the needs of the community of people with CP.