Cerebral Palsy Research Network Blog

Adult cerebral palsy outcomes to be added to CPRN registry

The Cerebral Palsy Research Network will expand its registry to include the study of adult cerebral palsy. Research about long-term outcomes for adults with CP was a key focus area identified in the 2014 NIH Workshop entitled “State-Of-The-Science and Treatment Decisions in Cerebral Palsy.” Workshop attendees Mary Gannotti and Deborah Thorpe volunteered to lead the effort to determine how to advance the study of outcomes of adults with CP. After examining which data sources might be most amenable to the study of adults, Dr’s Gannotti and Thorpe approached the leadership of CPRN to inquire about expanding the CPRN registry to include adults with CP. Given the number of CPRN participants that also treat adults and the importance of outcomes in the adult population, the CPRN leadership team invited Dr’s Gannotti and Thorpe to join CPRN and lead the effort to define the adult aspects of the CPRN registry.

Dr. Gannotti will join the leadership team and work with Dr. Thorpe to build an interdisciplinary team of clinicians to define the adult registry extensions and outcome measures. CPRN sites that treat adults will be able to enroll adult patients in the registry as part of their clinic.