Cerebral Palsy Research Network Blog

Archive for Research – Page 2

2020 Vision

The Cerebral Palsy Research Network (CPRN) is approaching its fifth anniversary. Our strategic plan, which was finalized in early 2016, was intended to go through 2020. As we look back, we find that our strategic plan has been a “North Star”, and we have made great progress. 

We originally defined three strategic initiatives:

  1. Foster and conduct high-quality, multi-center multi-discipline quality initiatives and clinical research on cerebral palsy.
  2. Sustain a world-class multi-center and patient-centered clinical research organization.
  3. Translate knowledge broadly.

In 2019 we heard from numerous sites that they wanted to participate in our registry with a focus on conducting high quality research and quality improvement.  We added Benioff Children’s Hospital Oakland, Children’s Mercy Hospital in Kansas City and Joe DiMaggio Children’s Hospital in Hollywood Florida. These additional sites strengthen the network’s reach and further diversify our registry footprint.  We also published our CPRN Registry Elements data dictionary and data transfer specification to further standardize and accelerate our data collection for our CP registry. Enthusiasm to join the network continues to be strong with nine additional sites on track to join in the near future. 

To accomplish our second strategic initiative, we established a fiscal structure for CPRN to receive ongoing grant support and participation fees to sustain our work.  Our standard operating procedures outlined in a manual that describes how we function as a network, were put to work for the review of study applications and additional manuscripts.  And our Community Advisory Committee, which is essential to keeping our work patient-centered, helped shape our research strategy by guiding us to launch two important efforts in 2019 in health care transition for CP and dystonia in CP.

Our research and quality initiatives continue to grow and take shape.  Our annual investigator meeting was hosted by the University of Michigan in May 2019. It was a high energy and focused advancement of current and future research projects.  We launched our Community Registry and MyCerebralPalsy.org – a consumer facing web portal with a forum, news and opportunities to participate in research — with our first study of adults with cerebral palsy focused on well-being and pain. And this year our registry data led to several presentations and posters featured at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine.

Our network approved four new research concepts from investigators pursuing grant applications that leverage CPRN. These topics included:

  • two on spasticity management strategies,
  • therapy dosing, and
  • the role of body composition.

Our partner CP NOW has committed to funding research that advances the Research CP priorities and leverages the use of CPRN’s resources. This study focuses on the role of speech in participation for children with CP. 

We ended the year with our second publication entitled “The Role of Registries in Cerebral Palsy Research” and we received pre-approval from the National Institutes of Health to submit a multi-center $14M study of spasticity interventions in early 2020!

Our research initiatives and infrastructure will continue to advance in 2020 as we turn to planning the next phase of CPRN’s growth and impact.  Our third strategic initiative is the most exciting as it is where CPRN can begin to measure its impact on outcomes for people with CP as we seek to “translate knowledge broadly.”  Translating means not just publishing results but also putting the tools and techniques into practice in the hospital and community settings. We have established a very broad infrastructure that will allow network sites to implement evidence-based medicine and quality improvement initiatives in the CP clinics at CPRN centers.  The CPRN registry will allow us to measure implementation AND track patient outcomes so that we can begin to achieve our mission of improving outcomes for people with CP.

We enter 2020 excited about our vision for the future and energized to make it happen!

CPRN Selects Study on Speech and Participation in Cerebral Palsy

Kristen Allison, PhD, CCC-SLP
Kristen Allison, PhD, CCC-SLP

The Cerebral Palsy Research Network (CPRN) has selected Dr. Kristen Allison’s study entitled “Speech and Language Predictors of Participation for Children with Cerebral Palsy (CP)” for funding for its Research CP Request for Applications.  Kristen Allison, PhD, CCC-SLP, an Assistant Professor in the Department of Communication Sciences and Disorders at Northeastern University, was one of five applicants accepted for consideration for the Research CP Award to be funded by CP NOW.  CPRN is excited to work with Dr. Allison on the integration of her study into CPRN’s community registry hosted on MyCP, CPRN’s web portal for community engagement in research. Parents of children with CP interested in participating in this study should register for MyCP for future notification of the opportunity to participate in Dr. Allison’s study.  The area of study directly addresses one of key findings from Research CP – the importance of participation for people with CP.

CPRN’s Scientific Review Subcommittee (SRS), a multi-disciplinary group of clinical researchers, reviewed and ranked the applications on scientific merit and fit with the Research CP priorities.   Dr. Allison’s study concept and design was the top-ranked application from this set of diverse and important applications.  This review was the first performed by our SRS and a milestone in the advancement of CPRN’s infrastructure to conduct high quality research.  The SRS includes representatives with extensive experience in conducting reviews for the National Institutes of Health and brought this expertise and rigor to CPRN’s review process.  The SRS provided detailed feedback to each applicant thereby helping them to improve his or her research designs and future applications. CPRN appreciates the commitment of the applicants to advance research for people with CP, and the volunteer efforts of the SRS in reviewing these applications. 

Congratulations to Dr. Allison on her excellent research proposal and thanks to all who contributed to these applications and review process.  And thank you to our partner CP NOW for its tireless commitment to supporting both CPRN, the community and the funding of innovative research.

Research CP Dystonia Edition Available for Viewing

Dystonia in cerebral palsy (CP) is not well understood. The Cerebral Palsy Research Network (CPRN) and its strategic partner CP NOW are sponsors of a program called Research CP, which is a collaborative group of CP community stakeholders trying to make a difference in CP research.  The latest series of webinars is called Research CP Dystonia Edition and the first webinar was last week.  It is now posted for public viewing.  The webinar presentation is 45 minutes and covers an overview of the Research CP Dystonia Edition initiative and the definition of dystonia in cerebral palsy (CP).  More than fifty participants watched the webinar. Following the presentation, Dr. Aravamuthan, a movement disorders trained pediatric neurologist from Washington University, answered questions from the 30 live attendees who included parents of children, people with CP, clinicians and therapists.

The introductory webinar for Research CP Dystonia Edition is the first of three in a series intended to educate the extended community on the state of dystonia in CP including standards of care, current research and gaps in knowledge.  People that attend or watch the webinar series will be invited to collaborate in an agenda setting process to determine the most important questions to be researched about dystonia in CP.  At the conclusion of the research agenda development, CPRN/CP NOW will seek to publish a paper describing the process and the results from Research CP Dystonia Edition.  In addition to broadly sharing the results of the process, CPRN will use the finalized agenda to drive its future research efforts related to dystonia in CP.

There is still time to get involved in the process!  Clinicians and community members can sign up at MyCP to participate in future webinars. The first webinar is available for viewing here.  The next webinar, entitled “A ‘Care Pathway’ for Dystonia” will be presented by Dr. Darcy Fehlings on October 30, 2019.  If you haven’t registered for the second webinar, you can do so here.  Please note that in order to participate in setting the research agenda, you must watch all three webinars prior to November 11, 2019 when the agenda setting will begin.  You don’t have to watch them live as they are recorded and can be replayed.  We hope you can participate and are excited to make progress on better understanding dystonia in relationship to CP.  With your help, we can prioritize the most important areas to study and hopefully make a difference in outcomes for people with dystonia in CP.