Members of the Cerebral Palsy Collaborative are advocating for the following language in the 2022 Appropriations Bill:
2022 LHHS Appropriations Bill Report Language Recommendation:
In National Center on Birth Defects, Developmental Disabilities, Disability and Health (NCBDDD):
Cerebral Palsy (CP) is the most common, lifelong motor disability caused by an early developmental brain injury. The mechanism of injury underlying CP is still not well-understood; therefore, the Committee encourages NCBDDD to explore cross-divisional funding opportunities, networks, data sets and systems to accelerate data-driven public health research to improve CP surveillance and develop better understanding of the mechanisms leading to earlier diagnosis and better outcomes to reduce the public health burden of CP. Private partnerships in select US NICU’s representing 10% of high-risk infants have reduced the age of cerebral palsy diagnosis from 19.5 months to 9.5 months by creating rigorous training and systems approach. Additionally, these methodologies have been utilized by CDC in other countries in response to the Zika virus. Therefore, the Committee requests $5,000,000 for additional US high risk infant follow up sites to reduce the age of cerebral palsy detection and diagnosis, as well as the addition of cerebral palsy to the existing surveillance sites across the Autism and Developmental Disabilities Monitoring (ADDM) network. Additionally, the committee encourages the CDC to conduct an updated study from the 2003 report on the healthcare and societal costs of CP in the US.
In National Institute of Neurological Disorders and Stroke (NINDS):
The Committee commends NIH (NINDS & NICHD) for supporting research on mechanisms leading to Cerebral Palsy, health outcomes for those affected, biomarkers that may aid in diagnosis or treatment selection, and interventions for treatment and prevention of Cerebral Palsy. The Committee strongly encourages NIH to prioritize and establish a dedicated Cerebral Palsy Funding Opportunity Announcement (FOA) to significantly strengthen, accelerate, and coordinate Cerebral Palsy research priorities across the lifespan identified in the 2017 NINDS/NICHD Strategic Plan for Cerebral Palsy research. This Cerebral Palsy FOA should target basic and translational discoveries, including neuroprotective, regenerative medicine and mechanisms of neuroplasticity, as well as implementation and clinical studies aimed at early detection and intervention, comparative effectiveness and functional outcomes. 2021 will be five years since the last Cerebral Palsy Strategic Planning workshop, therefore the Committee encourages that a follow-up workshop be held in 2022 in conjunction with key stakeholders. The purpose of this workshop will be to provide updates on promising research performed to date with the goal to further refine the specific opportunities that were identified in the 5-year NIH strategic plan including early detection and intervention. NICHD is also encouraged to consider a neuroplasticity workshop and research opportunities focusing on the motor and health benefits of physical activity for patients with cerebral palsy through the lifespan.