WASHINGTON, Oct. 19, 2018 /PRNewswire/ -- UsAgainstAlzheimer's announced two new projects to advance the recommendations of the National Strategy for Recruitment and Participation in Alzheimer's Disease Clinical Research, released today by the National Institute on Aging. The goals of the national strategy are to increase awareness and engagement among diverse communities, build capacity and improve research infrastructure, engage local communities and support research participants, and develop an applied science of recruitment.
"The national strategy is a first, but important, step on the path to faster, more efficient, higher quality clinical trials, which are necessary to accelerate Alzheimer's treatments and cures," said George Vradenburg, Chairman of UsAgainstAlzheimer's and a member of the Steering Committee for the National Strategy for Recruitment and Participation in Alzheimer's Disease Clinical Research. "We must act urgently to address challenges with national and global clinical trial capacity, including recruitment, enrollment and retention of study participants, because the millions of families affected by Alzheimer's can't afford to keep waiting for effective treatments."
UsAgainstAlzheimer's is committing today to undertake two new projects to fulfill the goals of the national strategy. First, through its Alzheimer's Disparities Engagement Network (ADDEN), it will partner with the National Minority Quality Forum and Sustainable Healthy Communities to develop the National Alzheimer's Index and Data Dashboard, a first-of-its-kind data platform that will help stakeholders visualize disparities and marshal resources at the zip-code level to address them.
"This important project lays the groundwork to truly address disparities in health outcomes and research in Alzheimer's," said Gary Puckrein, CEO of the National Minority Quality Forum. "By using data to map disparities and target our community outreach to those most at risk, we will be better positioned to translate research into meaningful change for all communities."
Second, UsAgainstAlzheimer's will develop a clinical trials awareness toolkit that research participants and caregivers can use to advance recruitment, answer questions about clinical trials and share their personal stories. Training clinical researchers and caregivers to be educational resources in local communities is critical to advancing the national strategy. The toolkit will be released in the next six months and be distributed in partnership with the Global Alzheimer's Platform Foundation.
"The National Strategy's focus on diversity and inclusion is absolutely critical given the projected increase of Alzheimer's among communities of color over the next decade," said Jason Resendez, Executive Director of the LatinosAgainstAlzheimer's Coalition. "While this is a good start, we look forward to a continued focus on addressing disparities in Alzheimer's through community-engaged research, new funding opportunities, and increased coordination among relevant federal stakeholders, including the National Institute of Minority Health and Health Disparities."
UsAgainstAlzheimer's is also improving clinical trial recruitment through its relationship with the Global Alzheimer's Platform Foundation (GAP Foundation). By focusing on novel strategies to connect study participants to its network of Alzheimer's disease research centers (GAP-NET), the GAP Foundation seeks to reduce clinical testing timelines by up to two years to streamline the path to market for more than 100 promising therapies in development.
UsAgainstAlzheimer's informed the approaches presented in the National Strategy for Recruitment and Participation in Alzheimer's Disease Clinical Research by participating on the Steering Committee and provide input. The strategy also was a central component of UsAgainstAlzheimer's 2017 National Alzheimer's Disease Disparities Symposium where cross-sector stakeholders provided feedback on the plan.
"Congratulations to the National Institute on Aging for its collaborative leadership with the broad Alzheimer's disease stakeholder community to take on this vexing and costly challenge," said UsAgainstAlzheimer's co-founder Meryl Comer, a member of the Steering Committee. "As the research focus moves toward prevention, we need healthy adults to recognize that the sooner we all step up to do our part in advancing clinical research, the better our odds to rescue ourselves and save generations to come. Together we do make the difference."
UsAgainstAlzheimer's leaders involved in NIA committees to develop the national strategy included:
- George Vradenburg, J.D., Co-Founder & Chairman, UsAgainstAlzheimer's
- Meryl Comer, President, Geoffrey Beene Foundation Alzheimer's Initiative, UsAgainstAlzheimer's Board Member
- John Dwyer, J.D., Global Alzheimer's Platform Foundation, UsAgainstAlzheimer's Board Member
- Stephanie Monroe, J.D., AfricanAmericansAgainstAlzheimer's Network
- Jason Resendez, LatinosAgainstAlzheimer's Network
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UsAgainstAlzheimer's (UsA2) is an innovative non-profit organization demanding – and delivering – a solution to Alzheimer's. Driven by the suffering of millions of families, UsAgainstAlzheimer's presses for greater urgency from government, industry and the scientific community in the quest for an Alzheimer's cure – accomplishing this through collaboration, innovation and disruption.