Entries by Editor MyCP

Patient-centered research webinar well attended!

Last night, Research CP held its fourth webinar on the new paradigm of patient-centered research and patient reported outcomes with Jacob Kean, Ph.D. of the University of Utah. Dr. Kean is an expert in patient reported outcome measures and and also a speech language pathologist. Many thanks to Dr. Kean for his time and insight!…

More than 100 attended Webinar #2 on Clinical Research

On Wednesday, March 15, 2017, Research CP, a collaboration between CPRN and CP NOW with a mission to engage patients, families and practitioners to set a cerebral palsy research agenda, hosted its second educational webinar about clinical research and comparative effectiveness. The session was led by Susan Horn, Ph.D, of University of Utah. We appreciate…

First Webinar for Research CP is a Success!

More than 200 from the CP community tuned into our first ever webinar – both live and recorded – this week to get an overview about the Research CP initiative. This response is fantastic and demonstrates the need to share ideas and be engaged. The webinar was the first in a series of five. Research…

CPRN Picks: Watch the NIH Presentation of its Strategic Plan for CP

The National Institutes of Health (NIH) strategy for cerebral palsy (CP) will be live streamed on Thursday, February 9, 2017. You can tune in to see the presentation videocast live. The CP strategy presentation is scheduled for 9:15 am ET during the National Institute of Neurological Disorders and Stroke (NINDS) Advisory Council meeting. The Cerebral…

National Cerebral Palsy Awareness Day

Each year, the patient advocacy organization Reaching for the Stars, persuades Congress to re-affirm March 25th as National Cerebral Palsy Awareness Day. At CPRN, cerebral palsy is personal and we want to call attention today, March 25, 2016 and share why we do what we do. Everyone on the founding team either has a child…

Cerebral Palsy Registry Forms Completed

The Cerebral Palsy Research Network (CPRN) completed its first set of cerebral palsy registry forms. The forms, built on the popular research platform called REDCap, will enable the first patients and events to be captured in the CPRN registry in the coming months. This milestone is important because it allows the providers to more easily…

The Genesis of the Cerebral Palsy Research Network

CPRN founder, Paul Gross, was recognized with the “Making a Difference” award at the annual American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) in October 2015. Paul was given an opportunity to address the general assembly of 1,100 attendees after accepting the award. His speech, entitled “From Anxiety to Impact: Focusing Parental Anxiety on…

CPRN’s Potential to Transform Cerebral Palsy Research

“It has been transformative for our field,” said Shenandoah “Dody” Robinson, M.D., a pediatric neurosurgeon at Boston Children’s Hospital, referring to the Hydrocephalus Clinical Research Network (HCRN), during a Cerebral Palsy Research Network (CPRN) information session at the annual American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) meeting on Friday, October 24, 2015. The…