The Sarah Jane Brain Virtual Center is an online ecosystem created for families of those with brain injury and the professionals who work with them. The first step in creating this ecosystem is the launch of the Sarah Jane Brain Registry. The purpose of the SJB Registry is to gather information about everyone affected by PABI and then convert the anonymous statistical information into a format usable by researchers in order to determine what works and what doesn't as it relates to treating pediatric brain injuries.
The second phase of the Virtual Center will be the establishment of a portal for families, physicians and other professionals to upload health records into an interoperable database to optimize the acquisition, storage, retrieval of this information in real time.
The third phase of the Virtual Center will expand the Open Source Initiative which began with the launch of the Sarah Jane Brain Project in October 2007, when for the first time in medical history all the medical records of an individual were posted online using open source principals. Sarah Jane Donohue was this first case. The Open Source Initiative will allow caregivers to opt their children into a first-ever open source database of neuroinformatics.
To dramatically change PABI for patients, providers and researchers, the full power of technology must be leveraged. Data management, communications, outcomes measures and education are among the technologies which will be enabled by the SJBP. Millions of children will benefit from this process, and hundreds of thousands of care providers will be empowered as well.
For more details on the Virtual Center, read Chapter 4 of the National PABI Plan (click here for the PABI Plan).
Over 75 members of the SJBF's International Advisory Board gathered in New York City from January 8-10, 2009, to analyze the current status of care for Pediatric Acquired Brain Injury, identify the problems along the continuum and then propose solutions. As a result of this effort, the first-ever National Pediatric Acquired Brain Injury Plan (PABI Plan) was drafted and then made public. The experts who developed the PABI Plan included physicians, allied health care professionals, educators The Sarah Jane Brain Foundation recognizes that many of the practices described in the PABI Plan are currently being implemented. It is the purpose of the PABI Plan to build on the many individualized practices that exist. However, the consistent availability, coordination and integration of the numerous well-established interventions, programs, and supports do not exist at the present time on a national level. The PABI Plan develops a seamless, standardized, evidence-based system of care universally accessible for all children/young adults and their families regardless of where they live in the nation.
The PABI Plan was developed into seven "Categories of Care" for preventing, identifying nd treating brain injuries in children and young adults: 1) Prevention, 2) Acute Phase, 3) "Mild" TBI Assessment / Treatment, 4) Reintegration / Long-term care, 5) Adult Transition Phase, 6) Rural /Telehealth and 7) The Virtual Center. For each Category of Care, a nationwide standard will be established for collecting translational data, a standard set of training, education and dissemination of information, and the ability to monitor and develop basic science research.
In order to carry out this integrated seamless system of care, the 52 Sarah Jane Brain Family (SJBF) Centers of Excellence were selected. With advances in technology, neuroinformatics and assessment including functional brain imaging and genomics, the establishment of a SJBF Center of Excellence in every state will dramatically improve the lives of children by increasing our understanding of the determinants of rehabilitation from PABI and to inform the development of innovative, empirically-based interventions. Such a system will offer significant cost efficiencies, funding efficiencies and independent revenue models. On June 5, 2009, (Sarah Jane's fourth birthday), the SJBF announced the largest health and education collaboration in history dealing with PABI: one institution in every state and the District of Columbia and Puerto Rico were selected as their respective SJBF State Lead Center of Excellence. Once the SJBF Centers are in operation, they will have three specific roles and be guided by four over-arching goals.
Roles of each SJBF Center:
These centers will serve not only as primary, secondary and tertiary care facilities but also as resources for individual physicians, caregivers, families and other hospitals. Data will be incorporated into a centralized registry (see SJBP Virtual Center), allowing for the efficient evaluation of best practices. Findings from research will be disseminated using methods developed by the SJBP to share knowledge gained with the entire brain injury community.
For the families who have experienced a child/young adult with a PABI, it is a terrifying and challenging experience. Their children are often not diagnosed and many are misdiagnosed. Access to comprehensive and integrative care is extremely rare. Most troubling, ongoing and coordinated support for the lifetime needs of someone with a PABI is virtually nonexistent. Families have to be constantly searching and reinventing services because there is no coordinated, seamless circle of care for those with PABI or their families.
Sarah Jane Brain Clubs are student-run, faculty-
supported organizations in high schools and universities across the country. The mission of each Sarah Jane Brain Club is to support the Sarah Jane
Brain Foundation in advancing our knowledge of the human brain to better prevent, identify and treat brain injuries throughout the world.
The first high school SJB Club was launched at one of the top high schools in America, Jericho High School on Long Island, New York, and the first collegiate SJB Club was launched at Harvard University (see media announcement here). Since the initial launch, numerous high schools and universities around the nation are starting SJB Clubs.
Starting and participating in a SJB Club offers students an opportunity to have a real impact on real people around areas of interest for each individual student. If you or someone you know would like to start a SJB Club in a school, please visit www.SJBClub.com and complete the starter kit.
The SJB Clubs will involve students from many different fields of study by offering up to eight Committees in each club that are relevant to students' areas of interest:
On July 20, 2011, the National Pediatric Acquired Brain Injury Plan Act (National PABI Plan Act) was introduced to Congress as House Resolution 2600 (HR 2600) by Rep. Leonard Lance (R, NJ-7) with 50 original bi-partisan sponsors (http://www.opencongress.org/bill/112-h2600/show). The bill would provide $2.9 billion in federal funding across all 52 PABI Plan-designated State Lead Centers to implement the PABI Plan over the course of seven years. All funds would be drawn from the discretionary budget of the Department of Health and Human Services, thereby adding no additional monies to the national debt.