The Cerebral Palsy Research Network (CPRN), founded in the summer of 2015, has reached its fifth anniversary. Born out of a 2014 workshop organized by the National Institutes of Health (NIH) and first designed to achieve a national registry for cerebral palsy (CP), CPRN has emerged as a multi-focus initiative and one that has given rise to a lasting partnership between the community and clinician researchers to improve outcomes for people with CP.
A 5-year strategic plan created in 2016 led to the realization of the following major milestones:
- Engagement of community, clinical and research stakeholders to set and prioritize a patient-centered research agenda. The engagement was accomplished through the establishment of a Community Advisory Committee and the execution of two patient-centered research setting initiatives called Research CP, the first of which was funded by the Patient Centered Outcomes Research Institute (PCORI). This research agenda guides CPRN’s research focus and is influenced, dynamically, via ongoing community engagement in MyCP.org which was launched in the spring of 2019. MyCP.org is a web portal that provides the community with opportunities to engage in CP research by participating in surveys and/or discussions with clinicians and researchers.
- Establishment of registry infrastructure to accelerate CP research. This infrastructure includes two registries: a clinical CP registry and a community CP registry. The clinical registry includes data from more than 4,000 patients from 17 enrolling centers and will grow as more of the 28 centers committed to hosting the registry contribute their patient data. The community registry, where community members register themselves and contribute their data and perspectives on CP, launched in 2019 with the inaugural annual survey of adults with CP.
- Facilitation of multidisciplinary research collaboration. Clinician researchers from multiple disciplines and multiple centers are tackling pressing and patient-centered research questions and quality improvement initiatives designed to improve outcomes for persons with CP. CPRN has submitted multiple grants and has received funding from NIH, PCORI, non-governmental organizations and private foundations for projects such as studying epilepsy in CP, genetics in CP and speech and language predictors of participation in CP. CPRN has also internally funded five quality improvement initiatives: adult care, dystonia, hip health, intrathecal pump infections, and care transitions, all of which seek to rapidly change clinical processes to improve outcomes for persons with CP.
The next five years promise new centers joining CPRN, more data collection and contribution from existing centers, and the development of many new patient-centered research and quality improvement initiatives. The anticipated growth will advance our development as a Learning Health Network that continuously improves treatments and outcomes for CP through research and quality improvement. Our focus over the next five years will give us more ways to engage the CP community and enhance outcomes locally, nationally and internationally.
This is the last in a series of blog posts on selective dorsal rhizotomy (SDR) in adulthood as part of Knowledge Translation Tuesday (KTT). Tommy Collison wrote this update at the recent five months post-op point. KTT will continue on CPRN on September 8, 2020.
- Broadly, everything is great — zero complaints, except that gyms/pools/physical therapists are closed.
- Generally feeling pretty solid on my feet. I had a fall a few weeks ago, but no ill-effects beyond some scrapes to my hand. I’ve been testing my standing endurance by cooking more — to the right is a pic of some challah I made last weekend. (Had the wrong kind of flour, it didn’t turn out just right. Reattempting right now with the correct flour: writing while it proves.)
- I think it’s still a little bit early to try and guess at effects of the surgery, especially since it’s an apples-to-oranges comparison of my life pre- and post-surgery, but some things I’ve noticed:
- More flexibility than before in certain muscles: imagine sitting on a chair and bringing your heel up onto the chair, as if you’re putting on a sock. I’m pretty sure I wouldn’t have been able to do that before.
- General fatigue — this is the one I’m really excited about. Before surgery, if I had a big/ long day (gym → work for 8-10 hours → dinner with friends → home), I would feel it in my legs. Not pain so much as a… heaviness. Just a dog-tiredness. Not sure the right phrasing. I think that’s lessened or gone now. Yesterday, I hung out with friends in the backyard, went for a 6 mile cycle, and then walked downtown and back, getting back just after 10pm. I got into bed and it wasn’t the same sort of “whew, glad today is over” fatigue, where I feel grateful to be lying down and not having to do anything. There was general tiredness, but less muscle tiredness.
- I’m staying down in Menlo Park, which is nice because it’s within walking distance (about a mile — 25 mins walk) to downtown, where I can get a takeaway coffee. I’ve had success with that sort of habit-stacking (need caffeine, also need to walk) and am walking downtown ~5 times a week.
- Doing stretching and stretching in the interim. Probably not as much as I should, but PT and I are seeing progress, especially in the squats, and I’m sending her videos. Another interesting bit of progress: we used to practice sit-to-stands and they were SO difficult. The other day, I got out of a chair hands-free without thinking about it. Those little steps forward are so nice.
- Using two crutches + AFOs outside, and one crutch inside.
- Got an AMAZING three-wheel bike that’s much safer, because three wheels mean that basically all balance considerations are taken care of. I have a nice 6 mile route that I’m doing 2-3 times a week, and I ordered a Peloton, so lots more cycling in my future.
Want to ask Tommy questions about his SDR? You can find him on the forum at https://mycp.org/ by posting a question with “Tommy” in the subject.
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!