On January 31, 2019, the Cerebral Palsy Research Network (CPRN) submitted eight abstracts to the American Academy for Cerebral Palsy and Developmental Medicine for its annual meeting. The growth and richness of the CPRN registries underpinned seven of the submissions including:
- an analysis on the surgical interventions captured in our CP registry;
- a descriptive analysis of epilepsy in the CP population of CPRN;
- and an updated descriptive analysis of our clinical registry findings;
- the results from our first year of our quality improvement protocol for intrathecal baclofen pumps;
- a demonstration poster of the CPRN community registry as a tool for cross sectional and longitudinal study of adult pain and physical, social and emotional wellbeing;
- a breakfast seminar on how to take advantage of our community registry;
- and an instruction course describing how investigators can partner with CPRN to develop studies leveraging our registries for preliminary data.
An eighth abstract is focused on the results of a qualitative study of practice variation for spasticity management of children with spastic diplegia. In addition to these submissions, the CPRN registry will be represented in a pre-conference symposium. As CPRN approaches its fourth year since its founding, its clinical CP registry has become a significant asset for research. CPRN investigators hope that the registry will be the source of numerous discoveries and improved outcomes for people with CP.