Rationale

The overall long term goal of The Brain Initiative is to create a large internet-based registry of subjects interested in participating in neuroscience research. At launch, we will be recruiting individuals 55 years and older living in the San Francisco Bay Area. The Registry will serve as a base for future recruitment of subjects for studies on prevention of Alzheimer’s, Parkinson’s and other Neurodegenerative diseases. This project has been designed in order to address a major challenge in the conduct of clinical research, the limitations on getting enough subjects for large prevention trials of neurodegenerative diseases. By utilizing online tools, including the registry, the website and a large outreach effort we expect to create a large pool of subjects in the San Francisco Bay Area that will be willing to participate in Prevention Trials. The Registry is innovative because it will include a consent form, a set of questionnaires, several on-line neuropsychological tests, and will be designed for longitudinal followup of registered subjects. We have already obtained funds for the creation of the registry. However, in order to enroll and longitudinally follow a large number of participants the project will require very substantial marketing, advertising and community outreach efforts. This application is to request funds for the marketing, advertising and outreach efforts.

The generalizability of The Brain Initiative applies in several areas:  First, this project is generalizable to all areas of neuroscience translational research, since the project will recruit subjects interested in participating in studies on all areas of brain research. Second, we will be working with CTSI to market and advertise The Brain Initiative to underserved minorities including African Americans, Hispanics, and Asians, as well to the LGBT community. Third, this project will serve as a template to other registries and recruitment outreach programs in cancer, cardiovascular disease, and other disorders. The scalability of The Brain Initiative will be achieved through the capacity of internet based registries to scale to large populations. Initially we will focus on recruitment in the Northern California area. However, we have already been in discussion with investigators in Los Angeles, New York, North Carolina and other areas who might be interested in using The Brain Initiative website/registry for recruitment of subjects in their regions. In addition, we are in discussions with Bruno Vellas (Toulouse, France), Simon Lovestone (London England), Merce Boada ( Barcelona, Spain) and Nikklas Mattsen (Gothenberg, Sweden) concerning the extension of The Brain Initiative to their countries, and more broadly internationally. 

Plan

We plan to complete The Brain Initiative’s website and registry by May 31st 2013.  Once all technical elements are finalized and thoroughly tested, the advertising and outreach efforts will commence. The plan is to perform the following activities: 1) Digital outreach: a. Facebook, Twitter and other social networking sites. b. Online banners, Google adwords and other online advertising. c. Print advertising including mass mailings. d. Press releases to various newspapers, radio and TV stations throughout the Bay Area. 2)Community Outreach. a. Large Community event (1). b. Small community event (1)

Criteria and metrics for success

With the effort and budget that we propose we anticipate that we will be able to register the first 2,000 participants into The Brain Initiative. Here are the milestones for the period of 6/1/13 – 5/31/14: Milestone 1: By 6/30/13, 100 subjects recruited in The Brain Initiative. Milestone 1: By 12/31/13, 750 subjects recruited in The Brain Initiative. Milestone 1: By 5/31/14, 2,000 subjects recruited in The Brain Initiative.

Cost and justification

We estimate that the overall costs will be $50,000 for both the Digital outreach and the Community outreach. The costs are as follows: 1)Outreach Coordination: $11,732 in personnel costs 2) Digital Outreach Costs: a. Personnel Costs: $8,978 for posting and engaging participants b. Vendor Costs: $13,000 for online advertising. 3) Community Outreach: a. Personnel Cost: $4,290 for coordination of events. b. Large Community Event: $10,000 in overall costs. C. Small Community Event: 2,000 in overall costs

Collaborators

Dr. Michael Weiner, Dr. Scott Mackin