Cerebral Palsy Research Network Blog

Archive for Patient Engagement

CPRN Accelerates Research Submissions

The Cerebral Palsy Research Network (CPRN) is excited to announce that six abstracts for breakfast seminars, scientific papers and an instructional course were submitted this week to the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) for its annual meeting. These research submissions are evidence of the growing body of work from the network and CPRN’s readiness to engage the cerebral palsy (CP) provider and research community in opportunities to collaborate. Here is the submissions’ docket :

Scientific papers:

  • Research CP, our initiative to set a patient-centered research agenda for CP, that was completed in June 2017;
  • An update on our clinical registry which has doubled in size (now greater than 1,500 patients) since our preliminary report last year;

Breakfast seminars:

  • The benefits of joining CPRN to educate investigators on the requirements to join and the impact on a site’s CP practice and patient population;
  • Research CP to share the results of its initiative with the CP research community;
  • How to conduct quality improvement with CPRN as demonstrated by our first protocol for reducing infections for intrathecal baclofen pumps;

Instructional course:

  • Conducting multi-center clinical research with CPRN which will lead investigators through the steps to propose new research to CPRN to strengthen applications, obtain funding and leverage the Common Data Elements that have been defined by the National Institute of Neurological Disorders and Stroke and AACPDM.

CPRN plans to showcase its research platform to other professional societies including the American Academy of Physical Medicine and Rehabilitation and the American Society of Pediatric Neurosurgeons. We believe these presentation opportunities will increase interest, participation and research results for the extended CP community including providers and people and families with CP. Please let us know if you have any questions!