Cerebral Palsy Research Network Blog

Archive for Patient Engagement

Cerebral Palsy Diagnoses Webinar

Bhooma Aravamuthan, MD, DPhil
Bhooma Aravamuthan, MD, DPhil

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar series would be on family attitudes toward a cerebral palsy diagnoses on Wednesday, November 18 at 8 pm ET. Bhooma Aravamuthan, MD, DPhil, a pediatric movement disorders neurologist from St. Louis Children’s Hospital, will share her objectives and preliminary data for this research. The presentation will be approximately 20 minutes and followed by an open Q&A. Dr. Aravamuthan is a leader in numerous initiatives for cerebral palsy (CP) in CPRN and the field with her recent appointment to the American Academy of Neurology Child Neurology Quality Measures Standing Workgroup. In conjunction with this study, Dr. Aravamuthan has been surveying clinicians who diagnose cerebral palsy in an effort to change the field’s understanding of CP with the advent of more genetic discoveries in conjunction with CP. In this webinar, she will talk about her recent study of clinicians and how she hopes to marry that with the feedback from families and individuals with CP to improve diagnoses and clinician / patient dialogue in support of families.

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!

World CP Day — Make Your Mark

The Cerebral Palsy Research Network (CPRN) is proud to participate in this year’s World CP Day.  We at CPRN, with our partner CP NOW, are enabling members of the cerebral palsy (CP) community to “Make Your Mark” through participation in CP research.  A little less than a year ago we launched MyCP.org and invited the extended CP community to make a difference by contributing to research – setting research direction, contributing your experience and interacting with clinician researchers committed to improving outcomes for people with CP.  MyCP is now over 1,000 people strong providing news, discussions and opportunities to participate in research from your phone or computer.  This past March we launched the MyCP webinar series so members of the community could learn about CPRN research initiatives directly from CPRN researchers.  Our research reaches from diagnosis into retirement so our community of people with CP, parents, advocates, clinicians and researchers are working to improve quality of life throughout the lifespan.  Join MyCP and tell us how you have made your mark!

CPRN Turns Five!

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.