The Cerebral Palsy Research Network (CPRN) posted a webinar entitled “How to Join CPRN” today. This 20-minute webinar features CPRN Chairman Paul Gross narrating a slide presentation that he delivered at a recent annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) in Montreal. The webinar takes prospective sites through a brief update on the founding and status of CPRN and then walks through the steps necessary to get the CPRN Clinical Registry up and running and how to formally join the network.
CPRN recently completed its Standard Operating Procedures (SOPs) that detail how investigators can apply to conduct their research with CPRN. The SOPs also describe the approval process for adding new sites to CPRN. This webinar will provide the fundamental background necessary to determine if joining CPRN is of interest to you and your institution for conducting research. The core difference between applying to conduct a study through CPRN and joining the network is the implementation of the CPRN Clinical Registry and ongoing collaboration for your institution. CPRN members are expected to implement the CPRN Registry at their institution and collaborate with other members of CPRN to plan and conduct multi-center studies and quality improvement initiatives.
The Cerebral Palsy Research Network (CPRN) has opened its network to researchers outside of CPRN. With the completion of its Standard Operating Procedures (SOPs), CPRN defined an open mechanism by which non-CPRN investigators could propose research concepts for the network. The CPRN SOPs, which are published on our website, detail how an investigator can approach the network for study consideration. The process involves multiple steps that begin with a discussion of the concept with the CPRN Executive Committee (EC). The CPRN EC determines if the study is a “fit” for CPRN with regards to medical disciplines participating in CPRN and is a priority on CPRN’s Research CP opportunity map. If given a green light, the investigator will develop a short concept proposal for review by the CPRN Investigator Committee for development into a full proposal. This process ensures that there is a fit and that members sites would be engaged in data collection for the proposed study.
Non-CPRN investigators that will develop studies approved by CPRN will be invited to join the network as a member. The study development process leverages the resources in the CPRN Data Coordinating Center at the University of Utah to develop the analytical plan and any additional data collection beyond those data collected as part of the CPRN Registry. Approved studies will be implemented using CPRN sites with the investigator’s site leading as the coordinating center for the study. CPRN was formed to accelerate important multi-center clinical research. We are excited to use our research infrastructure to continue to create high quality research that is important to the CP community.
NIH Workshop on CP in Neurology, 2016
Leaders from the Cerebral Palsy Research Network (CPRN) briefed numerous directors and program officers of the National Institutes of Health (NIH) on the progress that CPRN has made to create a United States based cerebral palsy registry and enable multi-center clinical research. The impetus to create the CPRN Registry was initiated at an NIH Workshop on CP in 2014 that was documented in Neurology in 2016 along with other priorities in cerebral palsy research. The CPRN Registry already has more than 900 patients from six centers since it began collecting data earlier this year. Twenty hospitals have committed to collect data for the registry and are in the process of readying their site to enter patients in the CPRN Registry.
CPRN was cited as an example of progress in CP research in the NIH Strategic Plan for Cerebral Palsy released earlier in 2017. The objective of the briefing was to determine ways that NIH and CPRN might collaborate to accelerate the NIH CP strategy. CPRN has invested in research network infrastructure similar to several NIH funded initiatives such as NeuroNext, StrokeNet and DS-Connect. NIH officers were interested to learn how CPRN’s burgeoning, rich data set of patient characteristics, interventions and outcomes could be mined to create new evidence based findings for CP treatment.
CPRN’s meeting with NIH officials comes just one month after the Senate Appropriations committee for Labor, Health and Human Services issued report language calling for increased collaboration between NIH and the research community and for the creating of funding opportunities for cerebral palsy. The report language was spearheaded by Reaching for the Stars: A Foundation of Hope for Children with Cerebral Palsy. CPRN appreciates the advocacy efforts of Reaching for the Stars and its impact on the dialogue with officers in multiple institutes in NIH.