Cerebral Palsy Research Network Blog

Archive for February 2019

UCSF Benioff Children’s Hospital Oakland Joins CPRN

The Cerebral Palsy Research Network (CPRN) welcomes investigators Ravinder Brar, MD of Orthopedics and Lauren Ostling, MD of Neurosurgery in collaboration with Adam Bartlett, MD of Pediatric Rehabilitation all from the University of California San Francisco (UCSF) Benioff Children’s Hospital Oakland, to the network. This expansion to Northern California is an important milestone for CPRN’s geographic coverage of the United States complementing CPRN’s representation in Los Angeles and San Diego.

Benioff Children’s Hospital Oakland has an active cerebral palsy (CP) program which saw 356 unique patients in 2018. Its multi-discipline involvement in the treatment of CP is a good fit for CPRN’s registry and studies currently under development.

“CPRN is a crucial avenue to research and collaborate with multiple disciplines across numerous institutions. CPRN seeks to answer critical questions that will improve the lives of our patients with CP and our abilities to care for them” says Dr. Brar, an orthopedic surgeon at Benioff Children’s Hospital Oakland. “Our multi-specialty team looks forward to actively contributing to CPRN’s efforts.”

CPRN Registry Propels Multiple Abstract Submissions to AACPDM

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:

  1. an analysis on the surgical interventions captured in our CP registry;
  2. a descriptive analysis of epilepsy in the CP population of CPRN;
  3. and an updated descriptive analysis of our clinical registry findings;
  4. the results from our first year of our quality improvement protocol for intrathecal baclofen pumps;
  5. 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;
  6. a breakfast seminar on how to take advantage of our community registry;
  7. 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.