The Cerebral Palsy Research Network (CPRN) posted the initial draft of its cerebral palsy registry forms on the resource page today. The CPRN Registry is intended to define the patient characteristics, interventions and outcomes for people treated for cerebral palsy at the CPRN centers. The data collected in the CPRN Registry will be used for planning high quality, multi-center research studies and quality improvement initiatives for cerebral palsy. The CPRN Registry consists of data elements, or fields, that are captured during the normal course of care for people with CP. The preliminary CP registry forms are implemented in the popular research platform called Research Electronic Data Capture (REDCap) and will be hosted by the CPRN Data Coordinating Center at the University of Utah Health System & Innovation Research Program. These forms will help with the pilot phase of the CPRN registry by allowing sites to begin entering patient data to test the CPRN registry capabilities. Ultimately, the CPRN Registry data will come directly from the CPRN sites’ Electronic Medical Record (EMR) system that is used by clinicians during patient visits and in-patient hospitalizations for cerebral palsy. The REDCap forms will also be used by sites that are not able to implement the CPRN EMR forms.
The CPRN Registry forms in REDCap format are available as PDF downloads for evaluation by the public – CPRN sites, candidate sites, other CP registries, patients and caregivers – and can be found on our resource page. CPRN welcomes feedback on the forms; please submit your comments to email@example.com.
The CPRN leadership team held its first face-to-face meeting Sunday, March 13, 2016 in Chicago. We had been working virtually for more than a year via conference calls and email. The opportunity to spend nine hours together in the same room allowed us to make incredible progress working on the strategy and plans rolling out the Cerebral Palsy Research Network. In attendance at the meeting were:
- Amy Bailes, PhD, Physical Therapist from Cincinnati Children’s Hospital
- Mary Gannotti, PhD, Physical Therapist from the University of Hartford
- Paul Gross, CPRN, Founder from Seattle
- Jacob Kean, PhD, University of Utah Data Coordinating Center
- Unni Narayanan, MD, Orthopedic Surgeon from SickKids in Toronto
- Garey Noritz, MD, Developmental Pediatrician from Nationwide Children’s Hospital in Columbus
- Jerry Oakes, MD, Neurosurgeon from Children’s Alabama in Birmingham
- Michele Shusterman, (via video conference), Patient Advocate from Greenville
Susan Horn, our PhD biostatistician from the University of Utah, was unable to join us.
The CPRN team spent the morning reviewing and finalizing the CPRN mission, vision, core values and strategic plan. The in-person meeting format was invaluable for achieving consensus on these critical elements to chart out course for the years to come. In the afternoon we discussed important operating procedures for data access and planning our quality and research agendas. And most importantly, we distributed our first team t-shirt! It was our first in person meeting of many to come we hope.
The Cerebral Palsy Research Network (CPRN) completed its first set of cerebral palsy registry forms. The forms, built on the popular research platform called REDCap, will enable the first patients and events to be captured in the CPRN registry in the coming months. This milestone is important because it allows the providers to more easily visualize the CPRN Common Data Model (CDM) that they collaboratively built in the second half of 2015. It will also provide the initial test bed for the CPRN Registry – validating the data fields and which medical discipline collects them. While the goal for the CPRN Registry is to collect patient data as part of routine clinical care directly into the institution’s electronic medical record (EMR) system, the REDCap based system will be used by some sites initially as an effort made after the patient visit. These early efforts will be critical to fine tuning the CPRN Registry data elements.
The CPRN Registry EMR forms, the interface that the clinicians will use during patient visits or surgeries, will replace the REDCap forms before the CP registry is broadly deployed at CPRN charter sites. These forms are being developed and tested by several CPRN sites for the leading EMR systems used by hospitals. During this early testing phase, REDCap clinical research assistants, rather than clinicians, will be responsible for the data entry based off of information available through the patient’s medical record. The availability of the CPRN Registry in REDCap will accelerate the development, testing and deployment of the CPRN Registry allowing CPRN meet or exceed it goals for deployment of the CPRN registry later this year.