The Outreach, Recruitment and Engagement Core (ORE Core) serves the needs of the Massachusetts Alzheimer’s Disease Research Center (MADRC) through leadership in outreach efforts to increase public awareness about the importance of AD clinical research; recruitment and retention support for the Clinical Core Longitudinal Cohort (LC) and MADRC affiliated clinical studies; and education of the community about current advances in early AD and other neurodegenerative diseases research.
Over the past 5 years, clinical research in AD has experienced a remarkable evolution, shifting its focus towards early detection of AD, even prior to the stage of clinically evident symptoms, utilizing advances in biomarker and imaging research. The recognition that AD represents a disease continuum has recently enabled much earlier intervention trials, including secondary prevention trials in preclinical AD. This transition in the field also brings new challenges in educating the public and health-care professionals about the evolving concepts in AD and in non-AD dementias and the importance of participating in biomarker studies, and in rapidly recruiting large numbers of appropriate participants for large-scale prevention trial initiatives. In order to meet these challenges, the MADRC ORE Core has transitioned leadership and refocused its mission on public outreach and recruitment efforts to support MADRC affiliated clinical research studies.
A continuing challenge in AD clinical research is the involvement of research participants from diverse backgrounds. This includes not only ethnic and racial diversity, but also socioeconomic and educational diversity, as it is critically important to disambiguate the impact of these factors on risk of cognitive decline and dementia, and understand barriers to recruitment. The ORE Core has implemented several initiatives to improve our outreach to diverse communities, break down the cultural and language barriers to participation, and facilitate enrollment of under-represented populations into observational and interventional studies.
We seek to catalyze outreach efforts to facilitate successful recruitment into our research projects; innovate to meet the challenges of communicating evolving concepts in AD and to increase the diversity of research participants; and educate both the public and health-care professionals about advances in AD research and the critical importance of participation in clinical research studies.
Our specific aims:
Aim 1: To assess and meet the ongoing recruitment and retention needs of MADRC Clinical Core and affiliated MADRC clinical research studies, including MADRC pilot projects, affiliated PPG and R01 studies, NIH funded multi-center observational studies and NIH and industry funded clinical trials.
Aim 2: To increase the diversity of participants in MADRC affiliated clinical research, working closely with our Community Advisory Board and our innovative research participant “Ambassador” program to increase the enrollment of ethnically and socioeconomically diverse research participants.
Aim 3: To build and maintain a Recruitment Registry to facilitate rapid enrollment into MADRC affiliated studies and replenish the LC as needed, registering patients from our memory clinics, former participants in the LC and other clinical research studies, and new potential research volunteers from the community.
Aim 4: To lead local and national outreach efforts to increase public awareness about early AD and the critical need for clinical research participation, working closely with community-based organizations, local media outlets, and integrating with NIA, ADCS, and Alzheimer’s Association initiatives.
Aim 5: To develop innovative methods to meet the challenges presented by evolving concepts of early AD, including collaborative studies on the impact of disclosing biomarker results, including PET amyloid imaging and CSF markers, to research participants.
Aim 6: To educate health-care professionals on recent advances in AD and other neurodegenerative diseases, providing personnel and materials for presentations in the greater Boston area, implementing metrics to assess the impact of our educational efforts, and writing broad-based review articles summarizing progress in the field.
Aim 7: To attract and educate promising new investigators interested in clinical AD research, serving as a conduit to the outstanding training opportunities through MADRC affiliated programs, providing guidance on clinical research design for pilot studies, fellowship and career development applications, and facilitating young investigator participation in new collaborative research initiatives.