PABI Plan - The Sarah Jane Brain Project

Specific questions regarding tracking are outlined below as well as research questions that can be
answered through the SJBF Registry.
1. Determine the optimum follow-up time
2. Determine important components that need follow-up
3. Determine what measures (child/young adult, family, service utilization, etc.) are most
relevant
4. Evaluate the efficacy of different comprehensive transition plans
5. Evaluate the economic impact on the child/young adult’s reintegration into home, school
and community life.
6. Carry out an epidemiological study of service delivery
7. Evaluate the effectiveness of maintenance therapy
8. Design and evaluate an IRODP (individualized recovery and ongoing development plan)
9. Determine risk factors for psychiatric co-morbidities
10. Determine the timing, intensity, venue for, and type of effective rehab interventions
11. Determine the role of the family in facilitating the outcomes of rehabilitation, school, and
transition to adulthood.
12. Determine how to individualize rehabilitation treatment strategies
13. Investigate the use of combination therapies
14. Determine most effective ways of evaluating treatment outcomes
15. Develop a strategy for chronically injured patient child/young adult to re-enter therapies
and/or training protocols
16. Determine biomarkers (imaging, laboratory studies, functional assessment) of
physiological recovery/neuroplasticity at each stage of development
17. Evaluate the optimal times/modalities for intervention in a range of domains (social,
educational, emotional) and independent living and vocational training
18. Evaluate how to promote success in higher education, employment and independent
living
19. Identify predictors of good long-term outcome after PA/TBI
20. Determine how to decrease the risk for psychiatric problems, substance abuse,
delinquency
21. Determine how to develop substance abuse programs that take into account special
populations
22. Determine how one promotes self-management strategies in order to reduce long term
disability risk factors
Research - Advocacy & Support
1. Identify the optimal case management strategy (e.g., directed by parents or professionals)
2. Determine how the family dynamics affect child/young adult outcomes
3. Document how intervention and support for families affect longer term child/young adult
and family outcomes
4. Identify the best models/timing for the child/young adult’s self-determination skill
development throughout childhood and adolescence
5. Identify the best model/timing for family training and education in a variety of skills
6. Identify who best delivers case management and child/young adult self-determination
skill development training consistent with validated principles of context sensitivity
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