Thanks to our merger with CP NOW and new research studies already off the ground, it’s been an exciting year so far for the CP Research Network. So, what’s next? Our new website!
Since our January merger, our team has been busy integrating four websites into one to create a new online home – cprn.org – a place where we will bring together our community, research efforts, education, and wellbeing programs.
Here’s a sneak peek of what’s to come!
To make things easier to navigate, our one platform, CPRN.org, will feature the four cornerstones of the combined organization:
1) Community Join a committed group of community members on the MyCP platform at CPRN.org. All are welcome, including adults with CP, parents, and caregivers, clinicians, researchers, and advocates shaping impactful research to improve the lives of people with CP.
2) Research The Cerebral Palsy Research pages of our soon-to-be-released site will fill you in on our active studies and highlight opportunities to participate in ongoing research to improve healthcare outcomes for people with CP.
3) Education Please take advantage of our educational resources and programs to help navigate CP from diagnosis to therapies, treatments, and interventions to maintaining mental and physical health and transitioning to life as an adult with CP. You’ll find many toolkits, guides, and resources all ready to download on our education webpages.
4) Health and wellbeing Log on for programs to maintain and improve physical health and wellbeing. We are working with our trusted partners to implement regular opportunities for community members to participate in healthy activities in their communities.
Most people living with cerebral palsy today are adults, yet there is a disconnect about how childhood neurological care should transition into adulthood. Today, Dr. Bhooma Aravamuthan, MD, DPhil, shares her efforts to bridge that gap…
As a pediatric neurologist, the bulk of my practice is caring for children with cerebral palsy, yet I did not receive training in the unique needs and concerns of adults with the condition.
As my patients make the often-difficult transition away from pediatric care to adult care, what medical symptoms and red flags do I tell them to watch out for? How can I help them advocate for their medical needs? How do I convince my adult neurologist colleagues that CP is not just something that happens to kids? These kids become adults, and they still need us.
Last year, I was elected as Vice-Chair of the American Academy of Neurology (AAN) Adults with Intellectual and Developmental Disabilities Section. My election was bolstered after I sounded the alarm that neurologists who care for adults should increase their focus on patients with CP. I am not alone in my passion for this topic, and there is a growing consensus that we need more expertise.
As I investigated this issue, I turned to the Cerebral Palsy Research Network and engaged with The Adults with Cerebral Palsy Workgroup within the network.
The workgroup features clinicians across specialties (including physiatry, physical therapy, developmental pediatrics, and orthopedics) who have long worked to increase awareness of the many changing needs faced by adults with CP.
I came to them asking, “Where do I start?” Together, we established what we knew, what we thought we knew, and what we needed to learn more about regarding the neurologic care of adults with CP. Along with a talented MD-PhD student at my home institution, Washington University School of Medicine, we conducted a comprehensive systematic review of the available literature on neurologic concerns faced by adults with CP.
The results were informative but also sobering. Adults with CP have twice the risk of stroke and eight times the risk of myelopathy (spinal cord compression and injury) than adults without CP. A third of adults with CP lose mobility as they age, and the majority suffer from increasing pain and fatigue. These are all concerns that require neurologic surveillance, which, by and large, is not occurring. We also established how much we still need to learn about the neurologic problems faced by adults with CP. As you may have guessed, there is still a lot we do not know.
In the article, we include recommendations for clinicians, researchers, and adults with CP about the kinds of neurologic symptoms to look for and what symptoms we need to learn more about.
We believe that resources of this type are an essential step toward ensuring adult medical practitioners are more aware of the issues facing adults with CP. Our findings highlight the critical need for ongoing neurologic surveillance of adults with CP.
At the least, we hope that including specific recommendations for adults with CP will empower patients to self-advocate until we, as clinicians, can bridge the wider knowledge gap we have regarding their care.
As word spreads of our recommendations, we have been encouraged by the positive feedback but are eagerly awaiting to see if this changes practice as well. While we are hopeful, we are not naïve. We will keep sounding the alarm until ongoing neurologic surveillance of adults with CP is the norm.
[If you want to participate in our adult study of personal wellbeing, please join MyCP!]
About Dr Bhooma Aravamuthan
Dr. Aravamuthan is an Assistant Professor of Neurology and pediatric movement disorders specialist in the Cerebral Palsy Center at the Washington University School of Medicine in St. Louis.
Last year, more than 1,000 people logged on for our MyCP webinar series as we came together as a community to discuss cerebral palsy (CP) research. We are thrilled to announce our webinar series will return in 2021 with our first installment, Research CP: Dystonia Edition Results, scheduled for Tuesday, February 9, at 8 p.m. EST.
Research CP embodies our efforts to engage stakeholders — community members, advocates, clinician and researchers — to set a research agenda that matters to the community. It began in 2017 with our inaugural effort to establish the top research questions valued by the community. The result was published in Developmental Medicine and Child Neurology in 2018 and has set the research agenda for the CP Research Network. In 2019, we launched Research CP: Dystonia Edition. We engaged more 160 people in educational webinars on the topic, community members and clinicians generated a prioritized list of unanswered questions about dystonia in CP.
The Research CP: Dystonia Edition Results webinar is the summary of our findings from this initiative to set a patient-centered research agenda for dystonia in CP. It will be presented by CP Research Network Chief Executive Officer Paul Gross, Bhooma Aravamuthan, MD, DPhil, a pediatric neurologist from St. Louis Children’s Hospital in Missouri, Darcy Fehlings, MD, a developmental pediatrician from Holland Bloorview Rehabilitation Hospital in Toronto, Ontario, Canada and Michael Kruer, MD, a pediatric neurologist and neurogeneticist from Phoenix Children’s Hospital in Arizona.
To find out more, please visit our MyCP Webinar Series page and follow the instructions to sign up and secure your Zoom link to the online event. Webinars will also be recorded for later viewing.
Throughout 2021, we will bring you eleven monthly webinars featuring principal investigators from the CP Research Network, sharing concepts, development, and goals from their network research. We will cover a broad spectrum of CP research ranging from genetics to care of adults with CP. The webinars are available for free to all CPRN community members and clinicians.
We encourage all who have participated in this important ongoing process to attend. We hope to see you there!