R33AG070604

Optimizing Research Infrastructure of Registries to Accelerate Participant Recruitment into Alzheimer's Focused Studies - Project Summary/Abstract

The suffering caused by Alzheimer's Disease (AD) is one of the greatest medical challenges of our time. With a heightened sense of urgency, numerous AD prevention trials are being launched, requiring an unprecedented number of healthy older adults to be screened to identify the thousands eligible to participate. At the same time, the number of trials in affected individuals and their care partners continues to rise. In 2019, there were 156 trials for the treatment of AD, an increase from 2018. Notably, this number does not include observational studies, which are also important to understanding AD and developing new interventions to treat or prevent it.

Improving participant recruitment methods has become a critical priority for the field. Initiatives such as the National Plan to Address AD call for greater attention to increasing enrollment into clinical trials and other clinical research. An outgrowth of the National Plan is the National Strategy for Recruitment and Participation in Alzheimer's Disease Clinical Research, which enumerated four goals, one of which is focused specifically on the need to "build and improve research infrastructure of registries in order to recruit and retain more and more diverse qualified study participants."

The objective of this proposal is to develop, deploy, optimize, and automate new website design/content, infrastructure, and functionality to support and sustain online recruitment, engagement, and retention of adults interested in participating in AD-focused studies, creating a sustainable and enduring resource to researchers. To accomplish this, we will build off our successful Alzheimer's Prevention Registry (APR), an online registry launched in 2012 with over 350,000 members, including approximately 90,000 enrolled in its GeneMatch (GM) program launched in 2015, via the following aims:

1) Develop, deploy, optimize, and automate a refreshed and sustainable website platform for the recruitment into and engagement of members in the APR and its GM program.
2) Develop, deploy, optimize, and automate a refreshed website platform supporting researchers' efforts to recruit APR and GM members.
3) Develop, deploy, optimize, and automate new functionality and processes for referring APR and GM members to AD-focused studies.

We hypothesize that:
A) The refreshed website will increase enrollment into the APR and GM, as well as engagement and retention of members.
B) The enhanced AD-researcher experience will increase the number of researchers/study sponsors leveraging the APR/GM for their participant recruitment needs, allowing them to complete enrollment faster.
C) The new functionality will increase the percentage of APR and GM members screening for and enrolling in AD-focused studies.

Banner Health

TO ENCOURAGE BIOMEDICAL, SOCIAL, AND BEHAVIORAL RESEARCH AND RESEARCH TRAINING DIRECTED TOWARD GREATER UNDERSTANDING OF THE AGING PROCESS AND THE DISEASES, SPECIAL PROBLEMS, AND NEEDS OF PEOPLE AS THEY AGE. THE NATIONAL INSTITUTE ON AGING HAS ESTABLISHED PROGRAMS TO PURSUE THESE GOALS. THE DIVISION OF AGING BIOLOGY EMPHASIZES UNDERSTANDING THE BASIC BIOLOGICAL PROCESSES OF AGING. THE DIVISION OF GERIATRICS AND CLINICAL GERONTOLOGY SUPPORTS RESEARCH TO IMPROVE THE ABILITIES OF HEALTH CARE PRACTITIONERS TO RESPOND TO THE DISEASES AND OTHER CLINICAL PROBLEMS OF OLDER PEOPLE. THE DIVISION OF BEHAVIORAL AND SOCIAL RESEARCH SUPPORTS RESEARCH THAT WILL LEAD TO GREATER UNDERSTANDING OF THE SOCIAL, CULTURAL, ECONOMIC AND PSYCHOLOGICAL FACTORS THAT AFFECT BOTH THE PROCESS OF GROWING OLD AND THE PLACE OF OLDER PEOPLE IN SOCIETY. THE DIVISION OF NEUROSCIENCE FOSTERS RESEARCH CONCERNED WITH THE AGE-RELATED CHANGES IN THE NERVOUS SYSTEM AS WELL AS THE RELATED SENSORY, PERCEPTUAL, AND COGNITIVE PROCESSES ASSOCIATED WITH AGING AND HAS A SPECIAL EMPHASIS ON ALZHEIMER'S DISEASE. SMALL BUSINESS INNOVATION RESEARCH (SBIR) PROGRAM: TO EXPAND AND IMPROVE THE SBIR PROGRAM, TO INCREASE PRIVATE SECTOR COMMERCIALIZATION OF INNOVATIONS DERIVED FROM FEDERAL RESEARCH AND DEVELOPMENT, TO INCREASE SMALL BUSINESS PARTICIPATION IN FEDERAL RESEARCH AND DEVELOPMENT, AND TO FOSTER AND ENCOURAGE PARTICIPATION OF SOCIALLY AND ECONOMICALLY DISADVANTAGED SMALL BUSINESS CONCERNS AND WOMEN-OWNED SMALL BUSINESS CONCERNS IN TECHNOLOGICAL INNOVATION. SMALL BUSINESS TECHNOLOGY TRANSFER (STTR) PROGRAM: TO STIMULATE AND FOSTER SCIENTIFIC AND TECHNOLOGICAL INNOVATION THROUGH COOPERATIVE RESEARCH DEVELOPMENT CARRIED OUT BETWEEN SMALL BUSINESS CONCERNS AND RESEARCH INSTITUTIONS, TO FOSTER TECHNOLOGY TRANSFER BETWEEN SMALL BUSINESS CONCERNS AND RESEARCH INSTITUTIONS, TO INCREASE PRIVATE SECTOR COMMERCIALIZATION OF INNOVATIONS DERIVED FROM FEDERAL RESEARCH AND DEVELOPMENT, AND TO FOSTER AND ENCOURAGE PARTICIPATION OF SOCIALLY AND ECONOMICALLY DISADVANTAGED SMALL BUSINESS CONCERNS AND WOMEN-OWNED SMALL BUSINESS CONCERNS IN TECHNOLOGICAL INNOVATION.

93.866 - Aging Research

National Institute on Aging (NIA) [HHS - NIH]

Phoenix, Arizona 850122700 United States

Single Zip Code

Advanced-Stage Development and Utilization of Research Infrastructure for Interdisciplinary Aging Studies (R33 Clinical Trial Optional) (PAR-20-071)

Amendment Since initial award the total obligations have increased 391% from $799,998 to $3,925,916.