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.
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.
The Cerebral Palsy Research Network (CPRN) has launched two new studies in its Community Registry hosted at MyCP.org. The first study, “Speech and Language Predictors of Participation for Children with Cerebral Palsy (CP),” is intended for parents or caregivers of children ages 4-17. The principal investigator, Dr. Kristen Allison of Northeastern University, was awarded the CP NOWResearch CP award in November 2019 in support of creating this study. Dr. Allison hopes to enroll at least 100 participants which is conducted entirely online. The second study, “Community views on cerebral palsy diagnosis,” was developed by Dr. Bhooma Aravamuthan of Washington University, to understand the meaning and the impact of different diagnoses related to CP have on families. The survey is available to parents and caregivers for children and adults with CP 18 years and older. Both studies can be taken by signing up for MyCP.org.
The CPRN Community Registry captures data directly from members of the community through our web portal at MyCP.org. More than 600 members of the community have signed up for MyCP. Community Registry studies are de-identified so there is no personally identifying information in the studies. Many of the studies in the Community Registry are longitudinal so they track outcomes over a long time. These two new studies are single studies with no follow-on annual measures. The speech and participation study does have potential compensation in the form of a drawing for a $100 Amazon gift card though most studies do not have similar incentive. Your time participating in these studies helps CPRN advance research that would not be possible without your direct input.