Cerebral Palsy Research Network Blog

Archive for November 2016

Support the Friends of CPRN on #GivingTuesday

The Cerebral Palsy Research Network (CPRN) enjoys the benefit of broad array of foundations and patient advocacy organizations that work together to advance the cause of cerebral palsy and research for better outcomes. On this day, #GivingTuesday, we ask that you consider supporting one (or more) of these organizations to help them continue in their critical work on behalf of all people with cerebral palsy and their caregivers. Thank you!


First CPRN Registry Training Completed

The Cerebral Palsy Research Network (CPRN) completed its first training for its cerebral palsy registry in REDCap. Two sites, Children’s of Alabama and Primary Children’s Hospital in Utah, participated in the training. REDCap is a web-based electronic data capture alternative to CPRN’s usage of Electronic Medical Record (EMR) systems to collect CP registry data.

While CPRN’s ultimate vision is to capture all of its CP registry data points through the use of a site’s EMR, REDCap is an interim solution that a few CPRN charter member sites are planning to use while they prepare their EMR systems to capture registry data.

This first training milestone is significant for a number of reasons including:

  • it is a key step to test the ability to collect and harmonize data from different data sources (Epic and REDCap);
  • it will validate the timing of planned data collection events for a longitudinal study;
  • it will increase the number of sites collecting CPRN Registry data;
  • it will refinoue r training to scale to more sites that plan to use REDCap;
  • it will test our cerebral palsy registry data model;
  • and it will allow for planning for future studies that may mix EMR data collection with REDCap.

Training materials will be posted on the resources page after revisions are made based on feedback from the participants in the training.

CPRN Leadership Team Member Receives Grant

Amy Bailes PT PhD, PCS receives funding from the American Physical Therapy Association (APTA) Academy of Pediatric Physical Therapy.

A Cerebral Palsy Research Network leader, Dr. Amy Bailes, received notification of an award for her application entitled “Toward a practice based evidence model for studying physic

Amy Bailes, PT Ph.D.

Amy Bailes, PT Ph.D.

al therapy dose in cerebral palsy” from the Academy of Pediatric Physical Therapy on November 4, 2016. The study aims to establish the reliability of capturing specific dosing information about the physical therapy (PT) session from the Electronic Medical Record (EMR). EMR based data capture by clinicians treating people with cerebral palsy is critical to the vision and success of CPRN. This study will validate whether details of the individual PT session can be quickly and accurately captured from the EMR.

The grant will fund a pilot study at Cincinnati Children’s Hospital to test the process for capturing information about the PT session from the EMR. If the study yields positive results, the PT session form will be integrated into the CPRN Registry to more completely understand the impact of PT dosing and outcomes.