On August 17-18, 2022, the National Institute of Neurological Diseases and Stroke (NINDS), in partnership with the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), held an online workshop to share progress updates and identify new challenges and opportunities in CP research that have emerged since the NINDS/NICHD Strategic Plan for Cerebral Palsy Research was released in 2017. The workshop followed the three priority areas of the strategic plan, focusing on basic and translational research, clinical research, and workforce development. Individuals with lived experience of CP and representatives of CP non-profit organizations provided important perspectives throughout the workshop. In opening remarks, a teenager with CP noted underrepresentation of teens in CP research and spoke about her experience participating in an NIH-supported study. And, for each workshop session, speakers and organizers heard and addressed questions submitted by attendees. These perspectives and ongoing engagement will help to ensure NIH research remains informed by the lived experience of the CP community.
Watch video recordings of the workshop:
August 17, 2022
August 18, 2022
Since the publication of the NINDS/NICHD Strategic Plan for Cerebral Palsy Research, NIH funding for CP research has increased approximately 15%, from $26M in FY 2017 to $30M in FY 2021. This research spans at least 15 NIH Institutes, Centers, and Offices and has included growing support for pediatric rehabilitation research, clinical trials, and research training and career development.
The 2022 workshop provided a forum for the CP community to share updates on progress that can inform new research directions. At the end of the workshop, NINDS Director Dr. Walter Koroshetz commended the strong emphasis on CP research across the lifespan and encouraged researchers to develop creative strategies that will protect against brain injury and maladaptive plasticity. He also lauded genomics-based approaches for identifying genetic underpinnings of CP that could lead to new therapies as well as advanced imaging techniques for brain and whole body motion analyses that could lead to biomarkers for early CP detection. In addition, he emphasized that the CP community wants to be involved throughout the research process and that this engagement with people who have lived experience leads to more meaningful research. He urged the broad CP community to continue to work together to achieve scientific advances that will make a real difference for people with CP.
The following topics emerged from workshop presentations and discussions as new or continuing opportunities for future research progress.
Updates on opportunities for cerebral palsy research
Basic and Translational Research
- Mechanisms of CP: Studies in animal models can advance understanding of the developmental impacts of neonatal brain injury associated with hypoxic-ischemic encephalopathy and premature birth.
- Precision phenomics and genomics: Detailed studies to identify and characterize genetic contributions to CP in affected individuals provide opportunities for diagnosis and targeted therapies
- Early risk detection and diagnosis: Advanced imaging, multi-modal assessments, and sophisticated data analysis approaches may improve individualized risk prediction, early diagnosis, and prognosis in infants with CP.
- Biomarkers and therapeutic targets: Identifying key alterations in nervous system development related to motor impairments may lead to new targets for therapy development as well as new biomarkers to facilitate translational and clinical research.
- Neuroplasticity: Understanding adaptive and maladaptive plasticity in children and adults with CP can inform rehabilitative interventions.
- Neuromodulation: Non-invasive brain stimulation approaches such as transcranial magnetic stimulation and direct current stimulation may transiently enhance adaptive neuroplasticity and mitigate maladaptive motor behaviors.
- Facilitating early intervention: More research is needed to identify and develop effective, tailored interventions for infants and young children at risk for CP and to facilitate evidence-informed care planning for families.
- Broader impacts of motor impairments: Gaps remain in understanding how motor impairments and other factors contribute to cognitive, language, and social development and to feeding difficulties in children with CP.
- Advanced technologies for functional assessment and restoration: Improvements in outcomes are modest with current interventions, and new innovations are emerging that combine biomechanics, neuroscience, and engineering, such as robotics that integrate with voluntary control to improve function.
- Transition from pediatric to adult care: Limited care services are available for patients transitioning from pediatric to adult care, and more research is needed to understand and address comorbid health conditions in adults with CP, including age-related conditions, psychiatric disorders, alcohol or opioid-related disorders, and pain conditions.
- Racial disparities in CP: Data from the CDC have shown that CP is more common among Black children than white children. Understanding and addressing contributions to disparities in prevalence and access to diagnosis and care requires more research as well as efforts to increase diversity among research participants and clinical care teams.
Workforce development and research resources
- Workforce diversity: For research that leads to more impactful outcomes, workshop participants advocated for a research workforce that reflects the diversity of individuals affected by CP.
- Multidisciplinary teams: To promote collaboration and innovation, build research teams combining multiple disciplines and sectors including clinicians and researchers from academia and industry and expertise in neuroscience, engineering, and data science.
- Community-engaged research: Engaging the CP community (people with lived experience of CP, families, other stakeholders) throughout the research process can drive progress that is meaningful to people affected by CP. This engagement should include perspectives from across the lifespan, support that eases participation in clinical research, sharing accessible research results, and working together on ways to implement new findings into systems of care.
- Shared research tools and resources: Centralized tools and resources such as common data elements and CP registries are facilitating collaboration, data sharing, and harmonization across studies. These resources should be routinely re-examined to ensure they meet needs across the diverse CP patient population.
|Time||Discussion Topic and Plan|
|11:00 AM||Welcome and Introduction – Dr. Diana Bianchi, Director, NICHD|
|11:10 AM||Overview of Cerebral Palsy Research at NIH – Theresa Cruz, PhD, NICHD|
|11:25 AM||Voice of the Participant – Caydance Anderson with Introduction by Rachel Byrne, PT Cerebral Palsy Foundation|
|Strategic Plan Priority Area 1 – Basic and Translational Research
Moderated by Jim Koenig, PhD NINDS
|11:45 AM||Neonatal Brain Injury Impacts on Development – Bhooma Aravamuthan, MD DPhil, Washington University St. Louis|
|12:05 PM||Genomic Insights into the Neurobiology of Cerebral Palsy – Michael Kruer, MD University of Arizona|
|12:25 PM||Early Diagnosis of Perinatal Brain Injury/Delayed Brain Development and CP – Nehal Parikh, DO MS, Cincinnati Children’s Hospital, OH|
|1:15 PM||Developing New Biomarkers and Pharmaceutical Treatments for CP – Katharina Quinlan, PhD, University of Rhode Island|
|1:35 PM||Neurodevelopment in High-Risk Newborns and Rehabilitation of Long-Term Disabilities – Nathalie Maitre, MD PhD, Emory University, GA|
|1:55 PM||Cortical Plasticity and Recovery from Neurologic Insult in Both Adult and Pediatric Populations – Bernadette Gillick, PhD University of Wisconsin|
|2:15 PM||Discussion – Moderated by Jim Koenig, PhD, NINDS|
|2:55 PM||Wrap Up Day 1 – Sahana Kukke, PhD, NINDS|
|Time||Discussion Topic and Speaker|
|11:00 AM||Welcome and Introduction – Ralph Nitkin, PhD, NICHD|
|Strategic Plan Priority Area 2 – Clinical Research
Moderated by Ralph Nitkin, PhD, NICHD
|11:10 AM||Physical Therapy Intervention for Young Children – Stacey Dusing, PhD, PT University of Southern California|
|11:30 AM||Communication Development in Children with Cerebral Palsy – Katherine Hustad, PhD University of Wisconsin|
|11:50 AM||Technologies for assessment and functional restoration- Diane Damiano, PhD, PT NIH Clinical Center|
|12:10 PM||Understanding the Healthcare Needs for Adults with Cerebral Palsy – Mark Peterson, PhD, University of Michigan|
|12:30 PM||Racial Disparities in Cerebral Palsy – Zachary Vesoulis, MD Washington University St. Louis|
|12:50 PM||Discussion Moderated by Ralph Nitkin, PhD|
|Strategic Plan Priority Area 3 – Workforce and Resource Development
Moderated by Adam Hartman, MD, NINDS
|1:50 PM||Clinical Trials for CP and Training CP Researchers – Sharon Ramey, PhD Virginia Tech|
|2:10 PM||Mobilizing for Cerebral Palsy: The science, team, and tech to move forward – Kat Steele, PhD University of Washington|
|2:30 PM||Common Data Elements – Theresa Moulton, PhD Northwestern University|
|2:50 PM||Use of Registries in CP Research – Paul Gross, Cerebral Palsy Research Network|
|3:10 PM||Discussion Moderated by Adam Hartman, MD, NINDS|
|3:45 PM||Wrap up – Dr. Walter Koroshetz, Director, NINDS|