Cerebral Palsy Research Network Blog

Archive for Patient Engagement – Page 2

MyCP.org reaches 1000 participants

MyCP.org, a web portal supporting community engagement in research for cerebral palsy (CP), crossed the milestone of 1,000 users this past week! MyCP.org is owned and operated by the Cerebral Palsy Research Network (CPRN) to provide a place for members of the extended CP community – people with CP, parents and caregivers, advocates, clinicians and researchers – to collaborate on advancing research to improve outcomes for people with CP. Community members can interact to share experiences, advise on research priorities, or learn about existing evidence for various medical treatments. Physicians and therapists that both treat and research the condition of CP often engage in the conversation or seek community input.

MyCP provides several functions for the community including:

Members of the community may contribute their experiences with each other and connect with researchers seeking to understand the experiences of people with CP and partner together for advancing research.  In addition to participation in research, the forum provides members with an opportunity to verify the latest evidence in support of medical and surgical treatments.  For example, this week a community member sought knowledge about an orthopedic surgery and received a reply from a renown CP orthopedic surgeon within 24 hours. (Please note: that MyCP is not a place to ask for medical advice, rather it is a learning and support environment where evidence for the general population may be shared. Talk to your medical team for specific information about you or your loved one’s condition, their specific needs or to understand how existing evidence may or may not apply to your situation and goals. )

MyCP is a resource for the whole community and our programming has been generously promoted by the CP Foundation, CP NOW and UCP.  CPRN thanks these organizations for the sharing our studies with the broader CP community. We look forward to reporting the results of the research back to their audiences over time.

MyCP’s community is made up predominantly of adults with CP, parents of children with CP and medical providers who treat people with CP. It also includes researchers, advocates and industry professionals. People from the community make up 80% of the participants and clinicians are 14%.  Of the 813 members of the community, 58% are people with CP and 37% are parents. There is also a teen only forum. There are many active studies for the community to participate in including “Speech and Language Predictors of Participation for Children with Cerebral Palsy” for the parents of children between 4-17 and the “Adult Study of Personal Wellbeing, Pain and Stigma.”  Please join the conversation and help make a difference in outcomes for people with CP!

Webinar: Patient Reported Outcomes and Shared Decision Making

Unni Narayanan, MD, MSc
Dr. Unni Narayanan is a pediatric orthopedic surgeon at SickKids

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar Series will feature Unni Narayanan, MD, MSc who is a pediatric orthopedic surgeon at SickKids in Toronto, Canada on Monday, August 17, at 8 pm ET. The topic is “Can we make patient reported outcome measures useful to patients and parents?” Dr. Narayanan has developed several patient-reported outcome (PRO) measures to assess the effectiveness of surgical interventions in cerebral palsy (CP). Now his research is seeking to determine if those PROs can be used to facilitate a shared decision making between patients/caregivers and clinicians. Shared decision making is a process by which clinicians and patients or caregivers collaborate to understand the evidence base behind interventions and the tradeoffs between interventions or alternatives to surgeries and medications. Shared decision making is very important in CP because most surgeries are elective. Dr. Narayanan will present his recently funded research project being done in conjunction with CPRN and then take questions from attendees. The presentation will be approximately 20 minutes followed by an open ended Q&A.

Parents, caregivers and adults with CP can access the PROs developed by Dr. Narayanan by joining MyCP.org where they can be found in the CPRN Community Registry. After completing one of these measures, you can print out the results to share them with your CP physician and facilitate the shared decision making process now!

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 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.