In our latest partner spotlight we caught up with Paul Gross, President, Chief Executive Officer and Co-Founder of the Cerebral Palsy Research Network (CPRN). Get to know CPRN and their mission to optimize the lifelong health and wellness of people with cerebral palsy and their families through high quality research, education and community programming.
What is CPRN?
The CP Research Network is the largest and most comprehensive collaboration of hospitals and community members working together to improve health outcomes for people with CP. We host the largest community and clinical registries in the US to gather robust and comprehensive data for research. We focus our research and consumer educational content on the health and wellness outcomes that people with cerebral palsy value most. We include the entire community in the research process, the development of education materials and the implementation of current clinical care pathways
How long has CPRN worked with NCHPAD?
Since January 2021.
What do you all do with NCHPAD?
We refer people from the cerebral palsy community to NCHPAD Connect for the MENTOR program.
What are some services you provide that people may not know about?
We provide education about cerebral palsy and engagement in research by the community with physician researchers.
How are you going above-and-beyond for participants?
We provide a place for them to connect with others who have CP in a private curated forum that also has clinicians available to answer questions.
We also give them multiple opportunities to participate in research as co-producers with clinical researchers or to share their lived experiences to help make a difference in the lives of people with CP.
What goals does CPRN hope to achieve for NCHPAD/MENTOR participants?
That MENTOR graduates will become lifelong learners of these well-being practices but will also engage with other community members to share the benefits of their experience with the program.
How is CPRN staying on the cutting edge in this field?
By partnering with the researchers at the University of Michigan, University of Colorado, Nationwide Children’s Hospital and Columbia, we are working with leaders in the field of adults with CP and the role of physical activity in their overall health.
What can participants expect to take away from in-person or virtual activities at CPRN?
A sense of community and that their efforts are making a difference in the lives of people with CP.
How has your partnership with NCHPAD benefited CPRN?
It creates awareness about CPRN in the field of disability as a beacon for those with CP.
How can people find CPRN and learn more about your services?
Visit us at Cprn.org.
