Cerebral Palsy Research Network Blog

Archive for March 2016

CPRN Registry EMR Forms Milestone Reached

CPRN Epic EMR Form

CPRN Epic EMR Form

Nationwide Children’s Hospital (NCH), along with Texas Scottish Rite Hospital, are leading the charge to build the CPRN Registry into the Electronic Medical Record (EMR) systems for CPRN. A major milestone for the CPRN EMR forms development was reached today. The forms for non-surgical doctors who treat people with cerebral palsy were released to the test environment at NCH. CPRN leadership team member Dr. Garey Noritz, the CP Program Director at NCH, will be testing the Epic EMR based forms this week. After making revisions, the forms will be released for testing during CP clinic days at NCH starting in April 2016. The CPRN Registry forms at NCH build on NCH’s experience with its own CP registry that was started several years ago. The CPRN Registry forms for Epic will be made available to other Epic sites that are part of CPRN for participation in the registry.

“The CPRN forms represent a next step in the impact of our existing CP registry at Nationwide Children’s,” said Dr. Noritz. “The EMR forms not only make our CP clinic more efficient, but now we can broaden the use of patient data to multiple to centers and improve the quality of care for people with CP.”

CPRN is working with member sites to get the CPRN Registry forms developed not only for the Epic EMR but also Cerner and AllScripts EMRs. These three EMR implementations will cover all of the existing CPRN sites and 90% of the candidate CPRN sites in the future. We greatly appreciate Nationwide Children’s Hospital and Texas Scottish Rite Hospital for making these forms available to other sites.

National Cerebral Palsy Awareness Day

Gross Poliski Family

The Gross Poliski Family

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 with CP, treats children with CP as a provider, or is deeply committed to research to improve outcomes for people with CP.

William is a blue belt

William is a blue belt

Our founder, Paul Gross, and our online editor, Lori Poliski, have an eleven-year-old boy named William who has bilateral spastic cerebral palsy (spastic diplegia). William was born prematurely at 30 weeks and went through the “preemie mill” with one insult after another to his 3 lb, 4 oz body. His early brain injury had a lasting effect in the form of the two neurological conditions: hydrocephalus and cerebral palsy. William is resilient with an infectious spirit and he demonstrated an incredible will to live then and now he is thriving. He inspires all who meet him. He loves to ride his recumbent bike, participate in non-adaptive karate, snowboard, read and build Legos. As his parents, it was trying to understand how best help him with his gross motor issues and his gait that led us to engage in cerebral palsy research and eventually found CPRN.

CP Awareness Day 2016

CP Awareness Day 2016

Given that today is National Cerebral Palsy Awareness Day, his mom Lori asked him what he would like people to know about cerebral palsy. William said, “Just because someone may have leg braces (orthotics), use a walker or be in a wheelchair doesn’t mean that they don’t have the ability to do whatever someone else may be able to do…they might just do it differently.” 

CPRN at NIH Workshop on Cerebral Palsy

Leaders, investigators, and advisors from the Cerebral Palsy Research Network (CPRN) are attending the National Institutes of Health (NIH) Workshop on Basic and Translational Research for CP this week on March 24, 2016. CPRN founder Paul Gross, a former National Institute of Neurological Disorders and Stroke (NINDS) Advisory Council member, helped organize the agenda for the meeting. Gross, along with numerous advocates in the CP community, have encouraged NINDS leadership to create a strategic plan for preventing, treating and curing cerebral palsy. The first step toward a plan began with the NIH Workshop on the State-of-Science and Treatment in Cerebral Palsy in November 2014. Of five key objectives identified by participants in that meeting, more focus on basic and translational research was an important area for NINDS to consider and this week’s meeting agenda will focus on basic and translational research goals.

The agenda and format will allow the attendees – clinicians, researchers and patient advocates — to discuss the latest scientific advances in promising areas with the potential to alter the course of CP including neuroprotection, neuroplasticity, imaging, stem cells and animal models. Several CPRN investigators and contributors including Dr. Yvonne Wu from UCSF and Dr. Shenandoah “Dody” Robinson from Boston Children’s are speakers in the workshop. The synthesis of this meeting should help NIH further hone a strategic plan for cerebral palsy. The meeting is being streamed live by NIH and can be viewed here.

CPRN views participation in this type of national government planning meeting as critical to its mission of improving outcomes for people with cerebral palsy. Many findings will eventually need a clinical trials infrastructure to bring the benefits to patients. The CPRN Registry will help inform researchers of the most important areas to focus on and determine how quickly a study could be conducted across our network. It will also enable following long term outcomes for people that receive a range of treatments.