Cerebral palsy (CP) is one of the most common causes of childhood physical and developmental disability, occurring in approximately 3 per 1000 births.1 With the increasing quality of medical care and ongoing medical advancements, life expectancy for those with CP is increasing. Currently, up to 90% of children with CP reach adulthood, with the greatest gains occurring in those with severe CP.2, 3, 4, 5 Although there are more adults than children with CP, most clinical services, interventions, and research studies are focused on children.6 Adults with CP have unique healthcare needs and risks compared to the general population, including two times greater risk of stroke, eight times greater risk of myelopathy, gross motor functional decline in at least one-third of those with CP and at an earlier age, chronic fatigue in more than 65%, and chronic pain in more than 60%.7 Increasing our understanding of the treatment of pain, functional decline, and fatigue in adults with CP has been identified by stakeholders as the number one priority for the CP research agenda and is also a priority for the National Institutes of Health.6,8 Despite these identified healthcare needs, risks, and priorities, there is currently very little information on appropriate treatments and recommended management.

To help bridge this gap, the Cerebral Palsy Research Network (CPRN) developed a lifespan clinical registry to collect comprehensive, systematic longitudinal data about clinical care and outcomes in CP.9 Prospective collection of clinical information will take time; however, the CPRN also collects patient-reported outcome data to gather information more expediently.10 The CPRN's patient-reported Community Registry includes surveys for adults with CP and is the first in the United States. Similar to CP registries that exist in other countries around the world, this provides the opportunity to systematically collect information on functional changes across age ranges and functional levels.11 This is the first analytic report of functional data for adults from the Community Registry.

The objectives of this cross-sectional analysis of CPRN patient-reported registry data were to:

Describe demographic and clinical characteristics, including patient-reported changes in function, of adult participants in the Community Registry;

Assess the relationship between functional decline and level of physical functioning, age, type of CP, pain, and fatigue; and

Compare measures of function and quality of life between those who have experienced functional decline and those who have not.