Cerebral Palsy Research Network Blog

Archive for Cerebral Palsy Registry – Page 2

Columbia’s Weinberg Family Cerebral Palsy Center Joins CPRN

The Cerebral Palsy Research Network (CPRN) announced that the Weinberg Family Cerebral Palsy Center (WFCPC) from Columbia University’s Irving Medical Center has joined the network.  The WFCPC is CPRN’s first site in New York City and provides a large and diverse patient population, including children and adults, for the studies conducted by CPRN.  The participation in CPRN, led by Jason Carmel, MD, PhD, includes an interdisciplinary team from orthopedic surgery, rehabilitation medicine, neurology and other clinical disciplines contributing patient and intervention data to the CPRN Cerebral Palsy (CP) Registry.

The Weinberg Family Cerebral Palsy Center is dedicated to improving the quality of life for people of all ages living with CP by providing comprehensive care, conducting groundbreaking research, and educating medical professionals, patients, and caregivers about the latest advances in cerebral palsy care. Members of the Weinberg CP Center team conducted over 3,700 patient encounters in 2019. Pediatric and adult services include orthopedics, physical medicine and rehabilitation, neurology, genetics, and mental health, along with social work and care coordination services. In conjunction with its clinical care mission, the Center’s academic efforts strive to bridge basic science and clinical research to directly impact the lives of patients living with cerebral palsy.

 “The goals and values of the CPRN are perfectly aligned with those of the Weinberg CP Center, and the CPRN is an incredible resource for multidisciplinary research and collaboration,” said Dr. Jason Carmel. “Our team is excited to begin contributing to the CPRN’s efforts, as well as participate in projects and initiatives that will undoubtably lead to a better understanding of how we can improve the lives of our patients.”

Webinar: Practice Variation in Spastic Cerebral Palsy

Paul H. Gross
Paul Gross, Chairman and Founder, CPRN

The Cerebral Palsy Research Network (CPRN) announced its fourth webinar in its MyCP Webinar Series entitled a “Practice Variation in Spastic Cerebral Palsy” would be open to the public on Tuesday, June 2 at 8 pm via Zoom.  Paul Gross, chairman and founder of CPRN and Adjunct Associate Professor at the University of Utah, will present his findings in practice variation in spasticity management in North America.  This 20-minute presentation will be followed by an open Q&A with Mr. Gross.

Paul Gross is the principal investigator for an internally funded study to look at practice variation in the treatment of people with spastic cerebral palsy (CP). The presentation will include qualitative data from interviews that Mr. Gross conducted with more than 40 clinicians in North America about their spasticity management practices and also data from the CPRN CP Registry about surgical interventions for spasticity including selective dorsal rhizotomy and intrathecal baclofen pumps from five centers. Approximately 80% of the people with CP have a diagnosis of spasticity as their movement disorder / tone type. While many treatments have been shown to be efficacious, clinical practice for treating spasticity varies greatly across North America. This presentation is planned for members of the community that are interested in learning about treatment differences and futures studies of spasticity management. Gross’s qualitative work has been used as preliminary data for the development and submission of two two grant applications to the National Institutes of Health to further study these variations in practice.

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!

Akron Children’s Hospital Joins CPRN

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.