Cerebral Palsy Research Network Blog

Archive for Cerebral Palsy Registry – Page 2

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.

CPRN Executive Receives AACPDM Mentorship Award

Garey Noritz, M.D.
Garey Noritz, M.D.

The Cerebral Palsy Research Network (CPRN) Executive Committee member Garey Noritz, MD, received the mentorship award at the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) annual meeting today, September 19, 2019 in Anaheim, CA. 

Dr. Noritz was recognized as

“an individual who has demonstrated outstanding leadership for trainees and colleagues in the field of cerebral palsy and other developmental disabilities. [AACPDM] considers the breadth and depth of the nominee’s contribution and impact on improving services and care, promoting professional education and research for individuals with disabilities, and the sustainability of the nominee’s mentorship over time.

–AACPDM Meeting Program 2019

Dr. Noritz is a founding member of CPRN and with his institution, Nationwide Children’s Hospital, is a leader in defining and implementing the CPRN Clinical Registry.  He is the principal investigator for the CPRN Clinical Registry. CPRN is proud to see Dr. Noritz be recognized for his contributions to the field and appreciates his ongoing contributions to the advancement of CPRN including being a front-line resource for clinicians implementing the CPRN Clinical Registry.  This mentorship award captures the essence of Dr. Noritz’s meaningful impact on the field of cerebral palsy and CPRN and its members congratulate him for the award and what it means.

CPRN Receives Five Study Applications

CPRN and CP NOW Foundation

CPRN and CP NOW – Partners in Research

The Cerebral Palsy Research Network (CPRN) received five complete applications in response to its Request for Applications that it launched in June 2019 with its partner in research, CP NOW. The study proposals (requesting up to $30,000) address concerns prioritized by the Research CP initiative which set a patient-centered research agenda for Cerebral Palsy (CP). The studies have been designed to leverage key aspects of CPRN such as its patient powered or clinical registry or its access to patients through it 25 participating centers.

The five studies address diverse areas of inquiry including:

  • predictors of social participation
  • outcomes in young adults with CP who are ambulatory
  • feasibility of adding body composition and strength to the CPRN registry
  • the influence of balance on functional outcomes
  • maximizing function and participation children who are non-ambulatory.

The RFA was open to non-CPRN investigators and includes two applications from external investigators. The applications will be reviewed and ranked by CPRN’s Scientific Review Subcommittee in October 2019 and the awardee(s) will be announced in November 2019.

CPRN appreciates CP NOW’s generous support for this inaugural funding opportunity for CPRN. We look forward to a continued partnership to address the Research CP agenda. CP NOW and CPRN are planning future community engagements to prioritize specific questions in CP research.