The Cerebral Palsy Research Network (CPRN) is a group of doctors, therapists and patient advocates collaborating to improve treatments and outcomes for people with cerebral palsy (CP). The network combines the expertise of doctors and therapists committed to treating CP with clinical epidemiologists and rigorous data collection practices to plan and execute high quality clinical trials and quality improvement protocols.
The mission of the Cerebral Palsy Research Network (CPRN) is to improve outcomes that people with cerebral palsy value most through high quality clinical research and quality initiatives.
The Cerebral Palsy Research Network (CPRN) welcomed Akron’s Children’s Hospital to the network and Micah Baird, MD, a pediatric physical medicine and rehabilitation physician, as its principal investigator. Akron Children’s Hospital is the 26th site to join the network and expands the network’s footprint into northeastern Ohio. The ongoing care for children with cerebral palsy (CP) occurs primarily in the NeuroDevelopmental Science Center at Akron Children’s Hospital and includes clinicians from pediatric rehabilitation medicine as well as developmental pediatrics, neurology, neurosurgery, psychology, and neuropsychology. The hospital system has cared for 1,961 people with CP in the last year so their participation in the network will substantially increase the patient data included in the CPRN CP registry.
Akron Children’s Hospital has been very agile in getting the CPRN CP Registry up and running in its practice. Patient data from clinical visits for CP will be de-identified and transferred to the CPRN Data Coordinating Center at the University of Utah. This agility allows Akron Children’s to participate in the generation of new evidence and quality initiatives to improve outcomes for people with CP and strengthens the CPRN CP Registry with a larger population and treatment history.
The Cerebral Palsy Research Network (CPRN) announced its third webinar in its MyCP Webinar Series entitled a “Report on Cerebral Palsy and Epilepsy” would be open to the public on Tuesday, May 5 at 8 pm via Zoom. Dr. Adam Ostendorf, a pediatric neurologist at Nationwide Children’s Hospital, will present his findings about epilepsy in the cerebral palsy (CP) population from the CPRN Registry. This 20-minute presentation will be followed by an open Q&A with Dr. Ostendorf.
Dr. Ostendorf is the principal investigator for the CPRN epilepsy study group which received funding from the Pediatric Epilepsy Research Foundation to extend the CPRN CP Registry to gather important data about children who also have epilepsy. Epilepsy is the most common co-morbid condition with cerebral palsy occurring in more than 30% of patients. But little research has been conducted on this unique population. Dr. Ostendorf will provide a community focused presentation on the data gathered since his grant was funded in 2018 and the implications for future research. The CPRN epilepsy study group includes neurologists from Children’s Hospital Colorado, Seattle Children’s Hospital, University of Michigan, and University of Virginia.
Interested participants need to register for the webinar to be sent instructions for joining. Webinars will be recorded and posted for later viewing. The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies. Please join us!
The Cerebral Palsy Research Network (CPRN) has launched two new studies in its Community Registry hosted at MyCP.org. The first study, “Speech and Language Predictors of Participation for Children with Cerebral Palsy (CP),” is intended for parents or caregivers of children ages 4-17. The principal investigator, Dr. Kristen Allison of Northeastern University, was awarded the CP NOWResearch CP award in November 2019 in support of creating this study. Dr. Allison hopes to enroll at least 100 participants which is conducted entirely online. The second study, “Community views on cerebral palsy diagnosis,” was developed by Dr. Bhooma Aravamuthan of Washington University, to understand the meaning and the impact of different diagnoses related to CP have on families. The survey is available to parents and caregivers for children and adults with CP 18 years and older. Both studies can be taken by signing up for MyCP.org.
The CPRN Community Registry captures data directly from members of the community through our web portal at MyCP.org. More than 600 members of the community have signed up for MyCP. Community Registry studies are de-identified so there is no personally identifying information in the studies. Many of the studies in the Community Registry are longitudinal so they track outcomes over a long time. These two new studies are single studies with no follow-on annual measures. The speech and participation study does have potential compensation in the form of a drawing for a $100 Amazon gift card though most studies do not have similar incentive. Your time participating in these studies helps CPRN advance research that would not be possible without your direct input.