The Cerebral Palsy Research Network (CPRN) invites you to cast your vote for the most important questions we need to answer about the diagnosis and treatment of dystonia in cerebral palsy (CP). Register to vote by June 12th at MyCP.org to cast your online ballot the week of June 15, 2020! If you are a member of the patient community or a clinician that treats people with CP, your vote is your chance for your voice to be heard and influence the research agenda for dystonia in CP.
CPRN has had more than two hundred people participate in our education program about dystonia in CP. Research CP Dystonia Edition is an extension of CPRN’s original patient-centered education program and prioritized agenda published in August 2018 in Developmental Medicine and Child Neurology. The goal of this program is to focus attention on this under-researched condition in CP and to generate and publish a patient-centered list of prioritized concerns.
Research CP Dystonia Edition participants have already created a list of “uncertainties” or questions that need to be resolved through research. CPRN will open up voting up to the whole CP community – people with CP, caregivers, clinicians, therapists and advocates – for one week in mid-June 2020 to set the priorities. Community members interested in voting on dystonia in CP research priorities should sign up on MyCP.org to receive voting instructions prior to voting.
CPRN will publish the resultant patient-centered research agenda and disseminate the results broadly to guide researchers in addressing the concerns that are most pressing to the community. Since its publication in 2018, Research CP is often cited in other publications and research grants to reflect community priorities and steer research efforts to those that are most meaningful to the community.
The Cerebral Palsy Research Network (CPRN) decided to increase its investment in knowledge translation following its annual investigator last week. For CPRN, to “translate knowledge broadly” means to reduce practice variation by implementing best practices and evidence-based medicine across the 26 sites in its network. Reducing practice variation has been demonstrated to improve outcomes which is central to the mission of CPRN. By tackling this in a whole network fashion, CPRN expects to improve outcomes for a broad population of people with cerebral palsy (CP) in North America.
CPRN held a modified version of its annual investigator meeting last week. Originally planned to be an in-person meeting of more than 40 investigators prior to the COVID-19 pandemic, last week’s meeting was attended by more than 50 investigators from more than 30 institutions via Zoom. Review of CPRN’s five-year strategic plan highlighted the need to invest more in knowledge translation. CPRN will pursue transforming its network into a learning health network – an established model for rapidly improving health care outcomes for a variety of diseases and conditions.
Peter Margolis, MD, PhD
CPRN hosted Peter Margolis, MD, PhD from Cincinnati Children’s Hospital as a guest speaker and an expert on building Learning Health Networks. His presentation sparked an enthusiastic dialogue amongst investigators to establish new quality improvement initiatives including adult care for CP, hip surveillance and dystonia in addition to our existing initiative for intrathecal baclofen pumps. CPRN’s adult care initiative, led by CPRN Exec Committee member Ed Hurvitz, MD, has already begun planning the new initiative to improve treatments and outcomes adults with CP. The other initiatives will establish leaders and working teams in the coming weeks. CPRN expects its increased investment in quality improvement initiatives will build on its cerebral palsy registry, complement its research efforts and accelerate the improvement in outcomes for people with CP.
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.