The MADRC Outreach, Recruitment, and Education Core has transitioned to new leadership over the past two years and has refocused its mission on community outreach and facilitating rapid enrollment into MADRC affiliated clinical research studies. The evolution of our field towards earlier detection and intervention in AD presents new challenges for public education and for recruitment of diverse participants into biomarker intensive studies. We seek to provide leadership in increasing public awareness about the critical importance of participation in AD clinical research and develop accessible information on the evolving concepts of very early AD. Over the past cycle, we supported the highly successful recruitment and retention of subjects for the Longitudinal Cohort as well as multiple MADRC affiliated clinical research projects and national multi-center studies, including ADNI, DIAN, ADCS and industry sponsored clinical trials. We have now instituted a proactive needs assessment for the Longitudinal Cohort (LC) and to support new MADRC affiliated research and national multi-center projects. We are working closely with the Clinical Core on retention of the Longitudinal Cohort, particularly participants from under-represented minorities, and to build a comprehensive Research Registry to supplement the LC in identifying clinically normal individuals and symptomatic patients who are ready to enroll in clinical research projects. We propose several new programs to serve the diversity recruitment needs of our Center, including an innovative Participant Ambassador Program and partnership with the Clinical Core on the new Spanish Memory Clinic. We are expanding our outreach to local community health and senior centers to increase the diversity of research participants. We are also reinvigorating our partnership with a diverse Community Advisory Board to better understand the potential barriers to enrolling participants from under-represented minority communities into intensive clinical trials with biomarker and imaging procedures, such as the ADCS Anti-Amyloid Treatment in Asymptomatic AD (A4) secondary prevention trial. We will coordinate with the newly proposed Neuroimaging Core, and our colleagues at other ADCs, to develop informative materials to educate the public and professionals about the appropriate use of PET amyloid imaging and methods to safely disclose information about amyloid status to research participants. We will implement quantitative metrics to assess our impact in community education programs and will develop anonymous subject satisfaction questionnaires to further improve the experience of our research participants. We remain committed to training young investigators and clinicians about the importance of early detection of AD and related dementias, and will support educational forums focused on advances in AD research, both locally and nationally, as well as working with the educational components of each of the MADRC cores to enhance training programs across the Center.

Agency
National Institute of Health (NIH)
Institute
National Institute on Aging (NIA)
Type
Specialized Center (P50)
Project #
2P50AG005134-31
Application #
8676354
Study Section
Special Emphasis Panel (ZAG1-ZIJ-4 (J1))
Project Start
2014-04-01
Project End
2019-03-31
Budget Start
2014-04-01
Budget End
2015-03-31
Support Year
31
Fiscal Year
2014
Total Cost
$160,974
Indirect Cost
$68,460
Name
Massachusetts General Hospital
Department
Type
DUNS #
073130411
City
Boston
State
MA
Country
United States
Zip Code
02199
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