PABI Plan - The Sarah Jane Brain Project

Registry technology has been used at BNI for generation of research data bases. Dr. Spetzler, the
director of the Barrow Neurological Institute, is using a solution for the BRAT database, a large
trial evaluating different treatment options for cerebral aneurysms. Web-hosted registries enable
multi-institutional trials. These solutions have also been extend to Cleveland Clinic (Wingspan
Trial), Hopkins, and GWU.
Automated Outcomes Measures
Particularly for PA/TBI, automated outcomes measures of the child and adolescent's functioning
would likely be of value. There are a variety of types of outcome measures to be advanced and
leveraged for PA/TBI.
Computerized testing technologies, such as ANAM4 (Automated Neuropsychological
Assessment Metrics) and ImPACT (Immediate Postconcussion Assessment and Cognitive
Testing) are examples of possible neuropsychological outcome measures. They can be used as
baseline and post-injury measures for neurocognitive changes that result from neurological
injury. In addition, web-based applications of measures that assess behavioral, social-emotional,
attentional, post-injury symptoms, executive control functions, and quality of life outcomes can
be employed to highlight treatment progress in real-time.
Registries and Repositories for Real-Time Data Analysis
Real-time data analysis will be facilitated through the SJBF Registry and repository technology.
For example, at the BNI, Dr. Spetzler receives updates of his trials (crossovers, complications,
etc.) weekly as an email update with graphical representations of current data. Stryker funded
creation of a registry/repository at BNI for low back pain, providing a common platform for back
pain specialists. This platform allows patients to register and complete a history form online.
The clinical encounter is completed. The patient then receives automated pain scales to evaluate
outcomes (P4P data). The BNI’s Dr. Nicholas Theodore plans to extend this platform to other
providers in his referral network, effectively allowing data exchange across practices. The
referral network may elect integration these data elements into their own EMR via HL7
integration, or alternatively, print the data and add to their chart. In either case, this allows for a
disease or health specific record to be generated across providers. Further, these data elements
could easily be added to or incorporated for study.
Technology Supporting Education and Documentation
Technology can deliver education and documentation, including that related to trauma from child
abuse (NAT) and similar injuries from motor vehicle accidents, falls and sports injuries. The
SJBF Registry will enable practitioners to register cases online (with or without identifiers). The
web portal guides the caregiver through a suggested workup (did you consider ordering this or
that, incorporating related educational pieces, etc.). Online educational methodologies (e.g.
Qube.com) can be tied to real-time reporting for surveillance and follow up. The practitioner can
be sent a message reporting outcomes measures and enabling analysis of what measures assisted
in the evaluation. A patient-centered ecosystem incorporating all aspects of the care cycle can be
used for long-term study, from initial event detection to first hospitalization and on through
clinical follow up and home care.
Summary
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