Cerebral Palsy Research Network Blog

Archive for June 2018

First Investigator Meeting Aims to Fill Study Gaps

Ralph Nitkin, PhD, Deputy Director of NCMRR

Ralph Nitkin, PhD, Deputy Director of NCMRR

The Cerebral Palsy Research Network (CPRN) Investigator Committee held its first in-person meeting on May 31 and June 1, 2018 in Houston, Texas. The goal of the meeting was to generate new study ideas that address the gaps in the Research CP agenda that was established in June 2017. Investigators and three members of our Community Advisory Committee spent the first day reviewing the progress CPRN’s registry development and new and existing lines of study. Community members shared their personal experiences with CP to emphasize the importance of the network’s mission.

The second day was spent in breakout groups to brainstorm new study interest in areas that are most important to the community. Breakout groups worked on major themes of the Research CP agenda including:

  • Comparative effectiveness of interventions;
  • Physical activity and exercise along with understanding aging;
  • Medical decision making;
  • Coordinating care across multiple disciplines and institutions.

Multiple ideas for studies were proposed in each of these groups and CPRN is developing new study groups to provide leadership to pursue these research opportunities.

Some the CPRN investigators at the Armadillo Palace

Some the CPRN investigators at the Armadillo Palace

Rich Stevenson and Mary Gannotti v. the good guys!

Rich Stevenson and Mary Gannotti v. the good guys!

In addition to focusing on the generation of new studies, the meeting was intended to provide a face-to-face networking opportunity for researchers and community members. A group dinner at the Armadillo Palace gave participants a great chance to eat some Texas BBQ, unwind and connect on a variety of personal and professional fronts. The majority of the participants felt that the meeting exceeded their expectations. One investigator commented:

“We should do this annually. It’s critical for continued engagement. Many of those at the meeting are the “front line workers” who understand the critical research questions in patients with CP, and without active engagement spurred by meetings like this, people with busy schedules tend to invest their time elsewhere.”

Community Advisors Jennifer Lyman, Nancy Yagodich and Lisa Diller

The community advisors valued the meeting as well:

“I am honored to have had the opportunity to share our story, our hopes and our dreams with the driven, dedicated and passionate investigative team that makes up CPRN. As a parent of a child with complex CP, it is heartwarming to see firsthand CPRN’s commitment to research that will improve outcomes, participation and the quality of life of all those with CP.” – Jennifer Lyman – mother of a child with CP and coordinator of the CP Collaborative.

“I have found the investigator meeting to be invaluable. It has ignited a renewed hope and the assurance that meaningful, full-scale clinical research studies will be conducted as evidenced through the dedication and collaborative efforts of the investigators of CPRN. Both hope and knowledge are necessary to build endurance, purpose, and resilience as the day-to-day challenges of CP are met.” – Nancy Yagodich – adult who has CP.

“It was exciting to hear all the steps forward that CPRN has taken since our inaugural meeting in Chicago last year. Hearing updates about the registry and progress towards the “top 20”, status of current studies, hearing from several community stakeholders, and taking part in “next steps” were several highlights of the meeting.” – Lisa Diller – PT and mother of a child with CP.

CPRN is looking forward to the next steps of advancing the studies discussed and forming the study groups around the new concepts that were generated. Stay tuned on our progress!