The formal presentations included: an hour long breakfast seminar on Research CP – our patient-centered research agenda – presented by Michele Shusterman, Paul Gross, Amy Bailes, PT PhD and Ed Hurvitz, MD; a free paper on the state of the CPRN registry and an analysis of the initial 2074 patients presented by Garey Noritz, MD; and an instructional course on partnering with CPRN to conduct multi-center studies with Paul Gross, Jacob Kean, PhD, and Michael Kruer, MD. These presentations included a breadth of reasons to participate in CPRN including:
- Participating in research that is most meaningful to the community of people with CP;
- Enrolling CP patients in the CPRN clinical registry to expand our understanding of this population in North America;
- Collaborating with CPRN to accelerate high quality multi-center research in CP.
CPRN investigators wore new lapel pins to indicate their participation in the network. Investigators were spreading the message that CPRN is open, strengthens research proposals and enables faster execution of research projects.
In addition, the importance of CPRN was mentioned during the general session by Michael Kruer of Phoenix Children’s and Ralph Nitkin, PhD of the National Center for Medical Rehabiliation Research. The presentations and the mentions in general sessions demonstrates that awareness of CPRN and its mission is on the rise.