PABI Plan - The Sarah Jane Brain Project

8. In addition, ongoing education and training are needed to continuously upgrade
therapeutics and skills based on new research, evidence and technology.
9. Improve communication among physicians, other care providers and family members in
addition to maintaining continuing contact with a SJB Family Specialist.
Solutions for inpatient rehabilitation:
1. Establish a Model PA/TBI Network to include inpatient rehabilitation to form a base for
patient care, research, education, and development of evidence-based practice for specific
pharmacologic agents, stem cell trials, nutrition, occupational, vision, physical, speech,
and behavioral therapies, and/or combinations thereof. Specifically, current experimental
models should be translated into clinical trials. Information regarding optimal timing,
intensity, and length of inpatient rehabilitation must be elucidated.
2. Establish a protocol for discharge including a case manager who works with the
rehabilitation team to assist patients/families in navigating networks of care, identifying
local resources, reintegrating into community/school, etc. Specifically regarding school
there should be an identified individual to facilitate re-entry.
3. Establish within each model group a process for advocating, educating, and
implementing PA/TBI recommendations for governmental agencies, third party payers,
health care systems, and communities.
Ensure practices (assessment, intervention, service delivery) are sensitive to developmental,
socio-cultural, and linguistic factors that consider the post-discharge needs and realities of the
child/young adult and family.
Research Priorities (not in particular order):
1. Timing, volume, type, and technique of fluid resuscitation of the child with polytrauma
and TBI have not been evidence-based or directly linked with long-term neurocognitive
performance.
2. Timing, type and techniques of systemic and neuromonitoring, and hemodynamic goals
has not been adequately investigated or linked to long term outcomes
3. Effect of systemic therapy on cerebral physiology and long term outcomes.
4. Timing and type of secondary insults on secondary TBI are not well defined and linked to
long term outcome.
5. The effect of delay throughout, especially when the continuum of care involves interfacility
transfer has not been accurately described nor linked to long-term outcome.
6. Identify candidate biomarkers (inflammatory, physiologic, etc) and translate these from
animal models, and validate in humans.
7. Develop and test safe and effective early-stage neuroprotective interventions that can be
tested in subsequent clinical trials specifically designed for a pediatric population.
8. Age and development related effects of various biomarker functions must be determined
and applied to critical care of infants and children.
9. Informatics systems that link laboratory data, imaging, and bedside biometric monitoring
must be evaluated and integrated with artificial intelligence systems to facilitate clinical
management, provide timely identification of organ system dysfunction, and provide
objective evidence of response to therapeutic intervention.
10. Examine barriers to adoption of interventions and implementation of evidence based
guidelines.
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