The Cerebral Palsy Research Network (CPRN) extended the registration deadline for Research CP Dystonia Edition until Friday, December 13, 2019. This extension means that people with an interest in dystonia in cerebral palsy (CP) – either members of the community or clinicians that treat people with dystonia in CP – can still join the research initiative to set a patient-centered research agenda for the condition! The program requires participants to watch three informational webinars about dystonia: definitions of dystonia, a dystonia care pathway and current research. The webinars total two hours of content delivered by leaders in the care, treatment and research of dystonia in CP. For existing participants, this extension gives more time to complete the program by viewing the remaining webinars over the next two and half weeks.
After viewing all three webinars, participants will be invited to submit their uncertainties or questions about treatment and research for dystonia in CP. “Uncertainties” can be any question that participants have that they believe requires further research. These questions may be related to diagnosis, treatment recommendations, causes or long-term outcomes. Next, in order to set the patient-centered research agenda, there will be a voting process on the proposed uncertainties and their importance. Although participants are not required to submit uncertainties in order to participate in the voting process, uncertainties must be submitted by December 13, 2019. The voting process to set the research agenda for dystonia in CP will take place in early 2020.
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.
The Cerebral Palsy Research Network (CPRN) released its educational series for Research CP Dystonia Edition on YouTube for public viewing. Research CP Dystonia Edition, a collaboration with CP NOW, is an initiative to set a patient-centered research agenda for dystonia in cerebral palsy (CP). The initiative led off with a three-part webinar series that stands alone as an educational resource. Those webinars have been recorded and posted to CPRN’s YouTube channel.
The webinar series includes the following topics and presenters:
Dr. Michael Kruer, Pediatric Neurologist from Phoenix Children’s Hospital and University of Arizona
Each webinar is approximately 40 minutes in length and provides invaluable information about the current state of diagnosis and treatment for dystonia in CP. The webinar series is designed for both members of the community with CP and clinicians that treat people with dystonia in CP.