The Cerebral Palsy Research Network (CPRN) is excited to announce that three of its abstracts have been accepted for the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) in Cincinnati, Ohio in October 2018. These opportunities to present CPRN’s efforts to AACPDM members is an important validation of our mission to accelerate clinical research for cerebral palsy.
The abstracts include:
- an analysis of the CPRN clinical registry presented as a scientific paper;
- an instructional course on conducting multi-center research with CPRN presented;
- a breakfast seminar on Research CP – our community-based research prioritization effort.
Each of these presentations represent different aspects of the work of CPRN – the creation of a CP registry in the U.S., the capability to conduct multi-center research and the research priorities that will guide work and collaboration. The acceptance of these abstracts demonstrates the multi-faceted interests of the CP research and provider community in working with CPRN. Having announced that our network is open for collaboration on research projects and open for sites to join, interest in CPRN has grown significantly over the last year with several new sites joining. CPRN also plans to hold a side meeting at AACPDM for new sites interested in joining the network.
The National Institutes of Health (NIH) has initiated a 1,000,000-person study called “All of Us” to implement its precision medicine initiative which enables researchers to develop therapies based on the unique characteristics of a patient’s genetics. This week, CPRN chairman Paul Gross, represented the needs of people with cerebral palsy at NIH’s research priority setting meeting in Bethesda, MD. “All of Us” has been designed to answer a multitude of health-related questions in the population.
In the Fall of 2016, the US Congress passed the “21st Century Cures Act.” The Energy and Commerce Committee defines this act as follows:
The 21st Century Cures Act (P.L. 114-146) accelerates the discovery, development, and delivery new cures and treatments. This game-changing law brings our health care innovation infrastructure into the 21st Century, delivering hope for patients and loved ones, and providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments.
“All of Us” will soon launch and begin enrolling 1,000,000 people from across the United States. Participants will have an initial clinical examine and contribute bio-specimens such as blood that can be used to create a genome wide association study. The genome sequence, the participant’s electronic medical record and self-reported surveys will be combined to create a unique study database that can answer critical questions of what treatments will work for which patients. The study is designed to be longitudinal (a study over time) so that it can answer questions about outcome and quality of life that are not typically able to be studied with traditional research paradigms.
Gross and others were able to contribute “use cases” — study questions and required data elements for collection – that were targeted specifically at long term outcomes in CP. These use cases augment the CPRN registry and other studies CPRN is planning by providing the potential for genomic data for patients in the CPRN registry. We will provide information about how you can enroll when the “All of Us” study is launched later this spring.