The Cerebral Palsy Research Network (CPRN) announced that its third publication entitled “Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report” was published in Archives of Rehabilitation Research and Clinical Translation this past week. The publication is “open access” meaning that anyone from the cerebral palsy (CP) community can read the article free of charge. The article, authored by the founding members of the CPRN Executive Committee, describes the creation of the CPRN Registry from a process perspective – who was involved, what were the objectives and how and why were the data elements chosen for inclusion in the registry.
In addition to defining the process, the article also provides a baseline registry report for the first few years of data collection. This preliminary report provides a descriptive analysis of the first 1858 patients – demographics, movement disorder, gross motor capabilities, and other clinical characteristics — included in the registry from eight sites. Since this articled was drafted, the registry has grown to more than four thousand patients from 10 sites. The registry is expected to continue to grow in step functions as more sites come online with their clinical practice supporting the registry.
The article also discusses how the CPRN registry uniquely leverages hospital electronic medical records (EMR) systems to include large volumes of data without burdening clinicians. The CPRN registry database has been built into Epic – one of the leading EMR systems. Development is underway for Cerner – another leading EMR system. The discussion section of the article also compares the focus of the CPRN Registry to the Common Data Elements for CP as defined by the National Institute of Neurological Disorders and Stroke in conjunction with the American Academy for Cerebral Palsy and Developmental Medicine.
CPRN’s other publications can be found on our publications page.
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.
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!