WFCPC Contributes Largest Data Push to National Cerebral Palsy Registry

The Weinberg Family Cerebral Palsy Center (WFCPC) has successfully submitted nearly 70,000 patient data points to the Cerebral Palsy Research Network (CPRN)’s cerebral palsy registry, marking its largest data submission to date.

The CPRN hosts the world's largest CP registry of over 25,000 people with CP. The clinical registry brings together standardized clinical data from member institutions across the country to better understand cerebral palsy on a population level. By combining information from multiple institutions into a shared, de-identified registry, the network allows researchers and clinicians to understand CP care, treatment and outcomes at scale. The expanded registry will support studies on disease progression and interventions.

This latest data push is a key milestone in the WFCPC’s participation in the network, formally integrating its patient population into the broader dataset. The 69,633 data points pushed were collected over a ten-year period. At the WFCPC, data is captured through routine clinical care during visits with our multidisciplinary providers. 

The WFCPC joined CPRN in 2020 and contributes data, clinical expertise, and leadership to jointly advance research, quality improvement initiatives, and health outcomes for people with cerebral palsy. The growth of the registry will allow a large data approach to address the questions that are most pressing for our patients and their families: what will the future hold for me or my child, which of the various treatments are right, and what are the short- and long-term risks and benefits? The registry will provide data to answer these pressing issues.