JOIN THE REGISTRY
WASHINGTON, D.C. – In a first-of-its kind medical initiative, a collaboration of the 52 top healthcare institutions in the country was announced today.
The historic announcement was made at a press conference on Capitol Hill at 11 a.m. in the Rayburn House Office Building, 4th Floor, in room 2345.
The 52 “State Lead Centers” – one in every state plus the District of Columbia and Puerto Rico – will work together and with other institutions in their states to address the number one cause of death and disability for children and young adults in the United States: brain injury.
These institutions consist of many top-rated children”s hospitals, research universities and health advocacy organizations staffed by the best pediatric neurologists and rehabilitation experts in the country.
In 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, which called for the development of a national system of collaboration to address the issue.
The Sarah Jane Brain Project (SJBP) held an open application period in March and invited institutions to apply to be the State Lead Centers in their respective states to implement the National PABI Plan.
A selection committee of seven well-known brain scientists and rehabilitation experts across the nation reviewed the applications and selected one institution in every state, plus one each in the District of Columbia and Puerto Rico, as the institution most capable of being the State Lead Center for their state.
Dr. Ron C. Savage, President of the North American Brain Injury Society and who spoke at today”s announcement and who served on the selection committee, stated, “The largest killer and disabler of our children is brain injury. Each year over one million children, adolescents and young adults are admitted to hospitals with brain injuries from accidents, sports, falls, abuse, disease and other tragedies. If we had one million children per year abducted in this country we would all be in an uproar and there would be Amber Alerts 24/7.”
He continued, “Unfortunately, children who survive brain injury end up with lifelong impairments, including problems with learning, language, behavior and motor skills. Families struggle to cope as their children and young people fail. For the first time in our country, and for the first time in the world, we have an opportunity to not only help treat children and young people who suffer brain injuries, but to also focus on preventing brain injuries. As professionals, we are so pleased that the cries of these children have finally been heard.”
SJBP founder Patrick Donohue remarked, “This level of national collaboration has never before been seen in medical history, where you have the best research universities and children”s hospitals all across the country working together for a common purpose to help children.”
He added, “It was shocking to realize that despite brain injury being the leading killer and disabler of our children, nothing had ever before been done to develop a nationally standardized medical or educational plan to address the issue. Furthermore, very little public awareness exists of pediatric brain injury even though it is a huge, high-incidence problem.”
Donohue started the SJBP in October 2007 after his daughter Sarah Jane was shaken by her baby nurse, causing a severe brain injury. Sarah Jane, who accompanied her father to the press conference on Capitol Hill and is celebrating her fourth birthday today, still cannot walk, talk, crawl or sit up on her own as a result of the traumatic brain injury (TBI) sustained when she was five days old.
“This is my birthday gift to her: the announcement of the 52 Sarah Jane Brain State Lead Centers of Excellence,” Donohue noted.
Each State Lead Center will be responsible for developing a statewide master plan for their state to address all seven categories of care, case management for PA/TBI families and facilitating efforts in their designated Regional Category of Care.
“To maximize functional outcomes of children with brain injury it is important to have a seamless continuum of care starting at the scene of the injury, through trauma resuscitation, acute and rehab care to community programs and school re-entry,” stated Gillian Hotz, Ph.D, Co-Director Pediatric Brain & SCI Program Department of Neurosurgery University of Miami Miller School of Medicine.
Hotz, who spoke at today”s press conference and whose institution was named as the National Lead Center for the Acute Category of Care, added, “Because of achievements in neuroscience research, particularly regarding the developing brain, we are on the threshold of medical and technological discoveries that will reduce the impact of brain injury in children. Through the efforts of the SJBF, we will now have a national system for ensuring that the greatest numbers of those with brain injury benefit from breakthroughs in clinical management, biomedical engineering, neuropharmacolgy, stem cell-based therapy and rehabilitation.”
The National PABI Plan is estimated to cost $125 million annually to implement across the country and will address each of the seven categories of care for each aspect of brain injury treatment ” prevention, acute care, rehabilitation, adult transition, rural/telehealth, mild TBI (Traumatic Brain Injury), and a virtual center that includes a family registry, electronic medical records and healthcare information technology.
Gerard A. Gioia, Ph.D., who also spoke at today”s announcement, noted, “Millions of children and adolescents sustain mild traumatic brain injuries (TBI) and concussions each year. We will work to change the unacceptable reality that far too many of these injuries go unidentified or untreated, affecting the child’s daily functioning in school and with friends, and putting them at unnecessary risk for re-injury or a lengthy recovery. We will develop a coordinated nationwide mild TBI care system and research agenda to eliminate the unnecessary burden placed on families and children. Mild TBI/ concussions in children and adolescents is a problem we can solve, and the PABI system will provide the stimulus for making this happen.”
Gioia is the Chief of Pediatric Neuropsychology at Children’s National Medical Center and is the Director of the Safe Concussion Outcome, Recovery & Education Program. His institute was named today as the National Lead Center on Mild TBI.
Sandi Chapman, Ph.D., Director of the Center for BrainHealth at the University of Texas – Dallas, stated, “The National Pediatric Acquired Brain Injury Plan will allow unprecedented advances to address the unsolved opportunities to prevent or repair the brain after injury in children into early adulthood. This plan represents one of the nation’s largest consortiums of experts and clinicians to comprehensively discover and rapidly implement the most effective methods of prevention and treatment across every state covering urban and rural areas.”
She continued, “Heretofore, efforts were valiant, but isolated, fragmented, available only in large metroplexes, and short-lived. A brain injury in childhood is a life long condition rather than a single event as it is currently treated. An earlier injury can exacerbate later cognitive development years after the injury, yet present health care fails to monitor or treat these children to restore cognitive and brain function at later stages of development. The National Pediatric Acquired Brain Injury Plan will not only provide needed funds for prevention/treatment development and delivery, but the National PABI Plan more importantly will be economically cost- effective by insuring children with brain injury become productive adults.”
Dr. Mark Proctor, Director of the Children”s Hospital Boston brain injury program which was today named the National Lead Center for Prevention of PABI, stated, “Pediatric brain injury requires extensive treatment and rehabilitation, yet has the potential to be avoided and its effects lessened.”
He added, “Children’s is proud to be recognized by the Sarah Jane Brain Project and to be part of this incredible initiative that is bringing much needed attention to such a significant health issue.”
PABI is a brain injury sustained from traumatic or non-traumatic causes from birth to age 25, since the pediatric brain doesn’t finish developing until that time. Traumatic causes can include motor vehicle accidents, falls, blast injuries from war, assaults/child abuse, sports concussions, gunshot wounds, or being struck by an object. Non-traumatic causes include strokes, brain tumors, meningitis, poisoning, insufficient oxygen, ischemia, pediatric AIDS and substance abuse.
For more information on the SJBP, visit www.TheBrainProject.org or call (212) 201-0599.