Cerebral Palsy Research Network Blog

Archive for Patient Engagement – Page 3

Webinar: Report from the Cerebral Palsy Registry

The Cerebral Palsy Research Network (CPRN) announced its second webinar in its MyCP Webinar Series entitled a “Report from the CPRN Cerebral Palsy Registry” would be open to the public on Thursday, April 23 at 8 pm via Zoom.  Dr. Garey Noritz, a developmental pediatrician and the Director of the Comprehensive Cerebral Palsy Program at Nationwide Children’s Hospital, will present the initial findings from the CP registry which includes both children and adults.  This 20-minute presentation will be followed by an open Q&A with Dr. Noritz.

Dr. Noritz is the principal investigator for the CPRN CP Registry which gathers medical, surgical and outcome data from patients during clinical care.  The CPRN CP Registry is critical infrastructure to accelerate CP research and was created in response to the strategic plan for cerebral palsy issued by the National Institutes of Health following a workshop on the state-of-the-science and treatment in CP in late 2014.  This presentation has been crafted specifically for the CP community to understand CPRN’s focus on research to improve outcomes in CP.

Interested participants need to register for the webinar to be sent instructions for joining.  Webinars will be recorded and posted for later viewing.  The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies.  Please join us!

CPRN Launches Community Education Webinars

The Cerebral Palsy Research Network (CPRN) has announced a new community education webinar series focused on its findings and directions in research for cerebral palsy (CP).  One webinar per month will be presented by the principal investigator conducting the research and be followed by an open Q&A.  Interested participants must sign-up. These webinars will not only provide the community with an excellent opportunity to learn about important new research projects but also to interact with the clinician researchers conducting these studies.  Webinars will occur on weeknights at 8 pm ET.

The first webinar, scheduled for Wednesday March 25, is focused on the preliminary findings about adult health and wellbeing from the adult registry that was launched last year.  It will be presented by Dr. Mary Gannotti, a professor from the University of Hartford and the co-chair of the CPRN adult study group, who has led the development of the study in conjunction with several clinicians who treat and study adults with CP in addition to help from the CPRN Adult Community Advisory Committee.

The webinars scheduled for the rest of the year include:

DateSubjectSpeaker
April 23Report from the CPRN Clinical RegistryGarey Noritz, MD
MayCerebral Palsy and EpilepsyAdam Ostendorf, MD
JunePractice Variation in Spasticity Management for DiplegicsPaul Gross
JulyFunctional Improved Related to Spasticity TreatmentsKristie Bjornson, PT, PhD
AugustPractice Variation in Spasticity Management for Children who are not AmbulatorySruthi Thomas, MD, PhD
SeptemberCP GeneticsMichael Kruer, MD
OctoberSpeech and ParticipationKristen Allison, PhD
NovemberFamily Attitudes About CP DiagnosesBhooma Aravamuthan, MD, DPhil

MyCP is a web portal that provides the extended community of people with CP including caregivers and providers an open forum to discuss research, participate in research and read about the latest efforts led by CPRN. It is owned and operated by CPRN.

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!