Weinberg Family Cerebral Palsy Center Hosts Virtual CPRN Conference
The Weinberg Family CP Center virtually hosted the Cerebral Palsy Research Network's (CPRN) fourth annual investigator conference in April of 2021. WFCPC’s Clinical Research Coordinator Kirsten Carlberg administrated the two-day online gathering of 45 clinicians from 28 academic medical centers. Dr. Jason Carmel and other members of the CP Center team attended the annual conference, joining other CPRN member sites and clinicians from the National Institutes of Health (NIH) to discuss a range of network studies and quality improvement initiatives.
What is CPRN?
The Cerebral Palsy Research Network (CPRN) is a group of clinician researchers and patients advocates collaborating to improve treatments and outcomes for people with cerebral palsy. In November 2014, an NIH workshop entitled “State-of-the-Science and Treatment Decisions in Cerebral Palsy” shed light on the need for a national patient registry. That meeting brought together leaders from NINDS, NICHD, and the American Academy of Developmental Medicine and Cerebral Palsy. As a direct result of discussion, the CPRN registry committee was formed.
The primary function of the network is to create a robust database of CP treatments and outcomes that accelerates the planning and execution of high-quality clinical trials.
Who is a part of CPRN?
The CPRN is composed of over 30 member sites. These sites include CP Centers and children’s hospitals from around the country. Membership in the CPRN requires that participating centers set up the CPRN Registry at their institution in order to contribute to ever-growing national CPRN Registry.
This year, we were able to make extensive use of breakout rooms for discussions and collaborations among smaller groups of investigators,” says CPRN President and Chief Executive Officer Paul Gross. “We were fortunate to have support from the Weinberg Family Center for Cerebral Palsy, making for smooth logistics.
What did the virtual meeting entail?
These meetings provide updates on CPRN activities, as well as provide opportunities for member sites to share innovations in CP care.
Day 1 of the conferences featured keynote speaker Marc Randolph, the co-founder and first CEO of Netflix, who shared his experiences of decision-making and innovation with attendees. Following this talk, and all day 2, conference participants were split into breakout rooms for discussions including, but not limited to, expanding leadership systems, engaging community members, and strengthening research and quality improvement projects.
The Weinberg Family CP Center's participation:
As a member of the CPRN, the WFCPC has begun to contribute to the shared mission of improving outcomes that people with cerebral palsy value most through high quality clinical research and quality initiatives. Most notably, WFCPC clinicians Drs. Heakyung Kim, Paulo Selber, and Linn Katus have committed to participation in various quality improvement (QI) initiatives advanced by the CPRN. These initiatives are aimed at improving the care and treatment for people with CP. Drs. Kim and Selber are members of the Adult CP QI initiative, while Dr. Katus is on the committee for Dystonia QI.
Membership in the CPRN ensures that the WFCPC is on the cutting edge of CP care through scientific exchange and collaboration.
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.
For more information about CPRN or to learn more about this specific event please visit here.