Cerebral Palsy Research Network Blog

Archive for May 2019

NIH Forum features CPRN’s Registry

The Cerebral Palsy Research Network (CPRN) chairman and founder, Paul Gross, moderated a panel of experts entitled “Big Data: How to Address Custom Needs” this past week at the National Institutes of Health (NIH).  The National Institute of Neurological Disorders and Stroke (NINDS), the largest funder of science of the brain and nervous system, held its annual Nonprofit Forum entitled “Progress through Partnership.”  The forum gathers leaders from patient advocacy organizations together with the directors of NINDS to increase understanding of the institute and enhance collaboration between NINDS staff and these nonprofits.

“Paul Gross has been an integral part of the success of the NINDS Nonprofit Forum for the past several years” said Nina Schor, MD, PhD, acting Director of NINDS.  “This year he took on the leadership role on a panel on Big Data featuring several distinguished speakers. He also led two successful breakout sessions for the more than 50 patient groups who were attending.”

The panel presented examples of the use of big data in a number of conditions including Alzheimer’s, cerebral palsy, Friedrich’s ataxia, hydrocephalus, Parkinson’s disease and ultra-rare diseases.  Panelists then gathered with attendees a breakout session to further brainstorm big data applications for attendees’ custom needs.  CPRN’s use of data gathered from electronic medical records systems and planned integration with genomic analyses provided attendees with a unique solution for making new discoveries. The breakout session delved into a vigorous discussion of patient registries of which many different approaches were represented in the room.  Ultimately, the NINDS Nonprofit Forum delivered on its promise of its title of progress through partnership.

Working with NIH is important for CPRN because it strengthens CPRN’s position for future grants because of our demonstrated innovation with our registry.

Watch the New Webinar on How to Partner with CPRN

The Cerebral Palsy Research Network (CPRN) released a new webinar entitled “How to partner with CPRN to conduct multi-center research” today. The original webinar was conducted in January 2019 by CPRN Chairman Paul Gross, CPRN Data Coordinating Center Principal Investigator Jacob Kean, PhD, and CPRN Principal Investigator Michael Kruer, MD.  The webinar was developed to educate researchers on the capabilities of CPRN to conduct multi-center research and how a researcher can partner with CPRN to leverage its capabilities.  The benefits to the researchers include: 

  1. Strengthen grant applications with CPRN preliminary data
  2. Accelerate research through established network sites
  3. Leverage integrated patient advisors.

“We are very excited to see how our open science approach has ignited new collaborations in research for cerebral palsy,” said CPRN Chairman Paul Gross.  “We expect five or more centers to join CPRN before the year’s end which would bring the total to 29 centers. This webinar and an upcoming Request for Applications opens the door for new types of research partnerships.”

The webinar’s release, here and on YouTube, is very timely as CPRN prepares its first Request for Applications in partnership with CPNOW, a foundation focused on community education and research funding and our community engagement partner.  The webinar describes the different types of studies that can be conducted with CPRN and the data management and analysis resources that it provides for investigators. 

Originally delivered as an instructional course at the American Academy for Cerebral Palsy and Development Medicine in the Fall of 2018, the webinar format makes the content accessible to everyone.  In the webinar, Dr. Kruer details how he partnered with CPRN to go to secure a multi-million-dollar grant from NIH for his CP genetics study.  We hope you watch and we welcome your feedback on how to make partnering with CPRN accessible and clear.

CPRN Streamlines Its Cerebral Palsy Registry Elements

The Cerebral Palsy Research Network (CPRN) has posted an updated version of its Cerebral Palsy Registry Elements on its website.  The CPRN Clinical Registry is a database of patient characteristics, interventions and outcomes for people with cerebral palsy (CP) treated at a CPRN site.  The CPRN Registry is built to accelerate the pace of research for CP in the United States.  It was established in conjunction with the strategic plan for cerebral palsy developed by the National Institutes of Health. The cerebral palsy registry elements were originally developed by a broad panel of CP experts that treat people with CP and conduct clinical research.

The updated version of the CPRN Registry Elements (RE) was created to facilitate the data transfer process from participating sites gathering data in their institution’s electronic medical records (EMR) to the CPRN Data Coordinating Center at the University of Utah Department of Population Health Sciences.  The revised RE:

  • Simplifies the number of elements found in the original specification,
  • Provides data definition for all elements,
  • Includes mappings to elements in the Epic EMR,
  • Enables searching so that researchers can easily find elements that are collected in the registry.

The CPRN Registry is currently approved for data collection at 20 sites in the network with active data collection started at 12 sites.  Other sites are in the process of preparing to collect data through their respective EMR systems.  The CPRN Cerebral Palsy Registry currently has more than 2,000 unique patients and is being used to support a broad array of research initiatives for CP.  Patient data is stored securely at the University of Utah’s Center for High Performance Computing. 

The streamlined CPRN Registry Elements are a critical milestone in getting the data we are collecting at our sites into the CPRN Registry in Utah so it can be used to support our manyfold research concepts.