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) 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!
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.