The Cerebral Palsy Research Network (CPRN), owner of MyCerebralPalsy.org, launched a study of adults with CP this past week. There are no studies that provide a comprehensive understanding of the affects of aging with CP from the perspective of the population of people with CP. The study is open to all adults (18 years or older) signed up for MyCP after completing the consent on the https://mycerebralpalsy.org/surveys page. The study begins with a series of questions about health and well being, employment status, and function abilities. If participants have had chronic pain, the study offers a series of questions on experiences with pain. Overall, the surveys can be completed in approximately 20 minutes. All of the information is confidential and stored on HIPAA compliant, secure servers at the University of Utah.
This study was developed by the CPRN Adult Study Panel — a panel of clinician researchers who treat adults with CP. The group consulted extensively with the CPRN Community Advisory Committee to develop the study concept. CPRN seeks to enroll 500 participants in the study over the next few years. The analysis of this data should reveal significant findings about the adult population with CP compared against the population on the whole. These findings should provide tremendous support for health care planning, insurance and future research studies.