In just a little over two weeks, CPRN and CP NOW will kick off the Research CP Workshop after months of planning and collaborating. Here is a snapshot to get you up to date:
- There are a total of 48 attendees registered including support and planning staff. The group is split evenly among members of the community and clinician/researchers.
- There will be a conference call/screen share option to attend remotely in place of live streaming which was too cost prohibitive.
- After culling the 400 ideas generated from the surveys and voting, there emerged a top 50 list in each of the two main areas of:
- Important research questions
- Most important improvements to care and treatment.
From this process, similar themes were discovered. Some of the most common general themes include (in alphabetical order):
Advocacy and Education (working to change knowledge of professionals, patients and caregivers or change policy that affect a broad group of people such as access to care, facilities or equipment)
- Best Practices (guideline development, “algorithms” for how to treat different types of CP, etc.)
- Comparative Effectiveness Research (of interventions including surgeries, medications, therapies, orthotics, therapy dosages, etc.)
- Complementary and Alternative Medicine
- Exercise and Physical Activity
- Increasing Independence
- Measurement Validation and Development
- Mental Health
- Understanding Aging
We plan to put this list of themes with their underlying questions out for another round of voting to further prioritize the research agenda. We will not use Codigital for this step but a more traditional survey platform. The goal will be to understand the priority of these higher level themes of research questions and care/treatment improvements. This next step should allow us to arrive at the workshop with the potential to make the most progress on setting a patient-centered research agenda.
Thanks for being engaged in Research CP. We look forward to what the next steps and workshop will do to bring our process to a close with the ultimate goal of improving the lives of those who have cerebral palsy.
Paul H. Gross
The Cerebral Palsy Research Network (CPRN) Founder and Chairman, Paul Gross, has been appointed to the faculty of the University of Utah’s (U of U) Health Services Innovation and Research (HSIR) Division of the Department of Population Health Sciences within the U of U School of Medicine. His appointment is as an Adjunct Assistant Professor
. Gross has had a long-standing relationship with the University of Utah since he co-founded the Hydrocephalus Clinical Research Network
with U of U neurosurgeon John Kestle, M.D.
, in 2006.
“Our mission in HSIR is to bridge from research to practice. Working with thinkers like Paul is essential to our mission,” said University of Utah’s Rachel Hess, MD, HSIR Division Chief. “Moving knowledge forward in dynamic ways that are not always typical in academia is critical to future health. Paul helps us keep that mission at the forefront.”
The founding of CPRN established a deep working relationship among faculty members in HSIR and Gross. CPRN leaders Susan Horn, Ph.D. and Jacob Kean, Ph.D., faculty at University of Utah, saw the opportunity to expand research capabilities by partnering more closely with him.
Paul Gross has a track record in creating clinical research infrastructure with business leadership skills that accelerate the pace of biomedical research. As faculty of the University of Utah, Gross will have broad access to the rich and diverse set of people, knowledge, and infrastructure to facilitate high-quality research to improve outcomes for people impacted by neurological disorders.
Established in 2014, HSIR does research that affects virtually everyone every day. The HSIR lab is clinical healthcare. The goal is that every patient has access to care that is timely, personalized and safe. The University of Utah was established in 1850 and ranks among the top 50 U.S. universities by total research expenditures with over $486 million spent in 2014 per the National Science Foundation.
The Cerebral Palsy Research Network (CPRN) trained two sites on Wednesday to begin data entry in the CPRN registry. Gillette Children’s Specialty Care and Seattle Children’s Hospital (SCH) are two of the 13 CPRN sites that have received approval from their institutional review board (IRB) to begin data collection for the CPRN Registry. While others sites are planning to enter CPRN Registry data directly into their electronic medical records (EMR) system, Gillette and SCH are getting an earlier start with a web-based collection system that CPRN offers. At the completion of this week’s training, five sites will be up and running with the CPRN Registry. These sites represent a demographically diverse population in the United States including:
Children’s of Alabama, Birmingham, AL
Gillette Children’s Specialty Care in St. Paul, MN
Nationwide Children’s Hospital, Columbus OH
Primary Children’s Hospital in Salt Lake City, UT
Seattle Children’s Hospital, Seattle, WA.
Other sites with IRB approval are actively implementing the CPRN Registry in their EMR but only our lead CPRN Registry site, Nationwide Children’s, is collecting data through that method today. The data collection from these additional sites begins to shift the mix of the CPRN Registry to a truly multi-center registry which is critical to the quality of our future research and our vision of a national cerebral palsy registry.