Cerebral Palsy Research Network Blog

Archive for Patient Engagement

CPRN Expands Knowledge Translation with Lily Collison

The Cerebral Palsy Research Network (CPRN) interview with author and mother Lily Collison, MA, MSc on July 8, 2020 was so popular that we have invited her to be a guest author / blogger on CPRN to expand our knowledge translation objective. A critical aspect of knowledge translation in medicine is making medical information and evidence more accessible to consumers — members of the community of people with cerebral palsy (CP). Ms. Collison’s book entitled Spastic Diplegia — Bilateral Cerebral Palsy is the quintessential example of knowledge translation. As the mother of a young man with CP, she worked closely with the medical professionals at Gillette Children’s Specialty Healthcare to explain the cause, progression and treatment of spastic diplegia for parents of young children, and adolescents and adults with that subtype of CP. CPRN’s third strategic objective is to translate knowledge broadly and “tapping into the experiences and writing of Ms. Collison is a great way to begin to fulfill that objective,” said Paul Gross, chairman of CPRN.

Tommy Collison, a young adult with spastic diplegia
Tommy Collison, a young adult with spastic diplegia and son of author Lily Collison, chose to get a selective dorsal rhizotomy at age 25.

CPRN has invited Ms. Collison to provide series of blog posts that detail various stages of her son’s growth and progress with CP and the decision making process for various treatments he has received. These blogs will be presented in a reverse chronology starting with his recent decision to under go a selective dorsal rhizotomy — an invasive neurosurgery that seeks to reduce spasticity through the cutting of specific sensory nerve roots in the spine. The blog posts will include not only her experience and decision making, but also, where appropriate, commentary from her son Tommy. Each post will present various interventions, progress, personal stories and outcomes as well as highlighting the decision making process and the clinical evidence that was or was not available to make these decisions. Ms. Collison will also be available on the MyCP Discussion forum to answers specific questions about her book, decisions she has made and the blog posts that she writes. The blog series will begin next week on CPRN.org and be cross posted on MyCP.org. If you want to follow the CPRN blog, you can sign up to receive alerts of new posts.

Webinar: Practice Variation in Spastic Cerebral Palsy

Paul H. Gross
Paul Gross, Chairman and Founder, CPRN

The Cerebral Palsy Research Network (CPRN) announced its fourth webinar in its MyCP Webinar Series entitled a “Practice Variation in Spastic Cerebral Palsy” would be open to the public on Tuesday, June 2 at 8 pm via Zoom.  Paul Gross, chairman and founder of CPRN and Adjunct Associate Professor at the University of Utah, will present his findings in practice variation in spasticity management in North America.  This 20-minute presentation will be followed by an open Q&A with Mr. Gross.

Paul Gross is the principal investigator for an internally funded study to look at practice variation in the treatment of people with spastic cerebral palsy (CP). The presentation will include qualitative data from interviews that Mr. Gross conducted with more than 40 clinicians in North America about their spasticity management practices and also data from the CPRN CP Registry about surgical interventions for spasticity including selective dorsal rhizotomy and intrathecal baclofen pumps from five centers. Approximately 80% of the people with CP have a diagnosis of spasticity as their movement disorder / tone type. While many treatments have been shown to be efficacious, clinical practice for treating spasticity varies greatly across North America. This presentation is planned for members of the community that are interested in learning about treatment differences and futures studies of spasticity management. Gross’s qualitative work has been used as preliminary data for the development and submission of two two grant applications to the National Institutes of Health to further study these variations in practice.

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!

Vote for the Most Important Research Questions for Dystonia in CP!

The Cerebral Palsy Research Network (CPRN) invites you to cast your vote for the most important questions we need to answer about the diagnosis and treatment of dystonia in cerebral palsy (CP).  Register to vote by June 12th at MyCP.org to cast your online ballot the week of June 15, 2020! If you are a member of the patient community or a clinician that treats people with CP, your vote is your chance for your voice to be heard and influence the research agenda for dystonia in CP.

CPRN has had more than two hundred people participate in our education program about dystonia in CP. Research CP Dystonia Edition is an extension of CPRN’s original patient-centered education program and prioritized agenda published in August 2018 in Developmental Medicine and Child Neurology. The goal of this program is to focus attention on this under-researched condition in CP and to generate and publish a patient-centered list of prioritized concerns. 

Research CP Dystonia Edition participants have already created a list of “uncertainties” or questions that need to be resolved through research.  CPRN will open up voting up to the whole CP community – people with CP, caregivers, clinicians, therapists and advocates – for one week in mid-June 2020 to set the priorities.  Community members interested in voting on dystonia in CP research priorities should sign up on MyCP.org to receive voting instructions prior to voting.

CPRN will publish the resultant patient-centered research agenda and disseminate the results broadly to guide researchers in addressing the concerns that are most pressing to the community.  Since its publication in 2018, Research CP is often cited in other publications and research grants to reflect community priorities and steer research efforts to those that are most meaningful to the community.