Last January, over 60 of the top medical professionals in the field came together in New York City and drafted the first ever National Pediatric Acquired Brain Injury (PABI) Plan. The goal for the Sarah Jane Brain Project (SJB) is for the PABI plan to create a model system for children suffering from all pediatric acquired brain injuries.
According to the SJB Project, pediatric acquired brain injury is the leading cause of death and disability for children under 15 years of age in the U.S., causes more than 5,000 deaths per year, more than 17,000 permanent disabilities, and more than 1,000,000 hospitalizations.
Complete medical and therapy research data on children suffering from brain injuries is available to doctors, researchers, parents, caregivers, therapists, students and the public on the web site www.thebrainproejct.org.
The SJB Project is now in the process of establishing Centers of Excellence for the PABI Plan. The Foundation will work with 52 lead centers with one from each state, plus Puerto Rico and the District of Columbia to establish a national information system.
The National PABI Plan is estimated to cost $125 million annually to implement across the country. The plan will provide for seven categories of care for brain injury treatment to include prevention, acute care, rehabilitation, adult transition, rural/telehealth, mild TBI, and a virtual center that includes a family registry, electronic medical records, and healthcare information technology.
The SJB project will be led by Patrick Donohue, whose five day old daughter was violently shaken by her baby nurse, resulting in severe brain injury. Donohue founded the project because he found no existing standard or convenient system for families to be able to find access to consistent long-term quality care.
Gillian Hotz, PhD, Co-Director Pediatric Brain and SCI Program, Department of Neurosurgery University of Miami Miller School of Medicine, said “Through the efforts of the SJB project, we will now have a national system for ensuring that the greatest numbers of those with brain injury will benefit from breakthroughs in clinical management, biomedical engineering, stem cell-based therapy, and rehabilitation.”
The Center for Health Sciences (CHS) at Oklahoma State University is one of the leads selected for the SJB Project in Oklahoma. OSU-CHS will be responsible for developing and implementing a statewide master plan in partnership with other state healthcare and educational institutions and organizations. In addition, OSU-CHS will be able to use its telemedicine expertise, as well as the mobile telemedicine clinic for rural outreach efforts. Research facilities include a hyperbaric chamber and a biomedical research department available for translational studies with clinicians.
Kayse Shrum, D.O., Chair of Pediatrics at OSU-CHS reports that the system caring for pediatric acquired brain injuries is fragmented and without a comprehensive system in place, physicians are faced with reinventing the wheel with each case.
In Alabama, the University of Alabama at Birmingham and Children’s Hospital of Alabama will be the lead for their state. UAB’s Division of Pediatric Rehabilitation Medicine will be the coordinator for the project.
According to Drew Davis, M.D., Assistant Professor of Pediatric Rehabilitation Medicine at UAB and Director of the UAB Children’s Center, “There is a tremendous need for funding and resources so we can better understand the natural history of brain injury and develop appropriate interventions to help the children affected by acquired brain injury each year. We also need an evidence-based standardized approach to care for all phases of pediatric brain injury treatment and recovery.”