PABI Plan - The Sarah Jane Brain Project

amongst themselves or one another fostering support, new personal knowledge and new clinical
knowledge.
Figure 6: The integration of the data across providers, patients and locations provides a
new and unique resource for addressing PA/TBI.
SJBP Technology Solutions:
Registry Technology for Research Communities
To advance research, creation of a research-specific data registry portal can be accelerated.
Using the registry platform, a typical IRB can be published for data acquisition in 8-10 weeks
with real time reporting of data elements. For example, Communities for a Cure currently is
focused on Multiple Sclerosis (MS) and Parkinson's disease. These communities have more than
50,000 participants enrolled nationwide. With their portals, an advocacy group (currently
MAPRC and NARCOMS) communicate with and collects data from their participants. This
information can be used to identify subjects for study. A researcher can identify specific groups
for study (for example, women of a certain age with a two-year history of MS using fewer than
two medications). These participants can be invited to participate in a trial and contact the
researcher directly. The community can also be contacted with a question; a recent question
asking about smoking and MS received 2,000 responses within 24 hours. These registries are
self-reported by patients, who are invested in finding a cure for their own disease. Registries
have been extensively validated over the last decade.
Registry Technology Supporting Research Databases
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