Recruitment: Federal public education campaign (Milestone 12.G)
In Progress
Timeline Start - End
2016 - 2025Research Implementation Area
Recruitment and Citizen EngagementEstablish a partnership among NIH and other federal agencies to develop a national public education campaign to:
- Eliminate the stigma of aging and dementia;
- Provide accurate evidence-based information on environmental and lifestyle factors associated with the development and maintenance of a healthy brain and cognition, and;
- Educate patients, caregivers, physicians, and other stakeholders on the importance of patient enrollment into clinical trials as well as natural history and non-interventional studies that could yield biomarkers for precision medicine research.
Success Criteria
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Launch national public education campaign to:
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Eliminate the stigma of aging and dementia;
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Provide accurate evidence-based information on environmental and life-style factors associated with the development and maintenance of a healthy brain and cognition;
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Educate patients, caregivers, physicians, and other stakeholders on the importance of enrollment into clinical trials as well as natural history and non-interventional studies that could yield biomarkers for precision medicine research, and;
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Encourage recruitment of diverse populations.
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Launch a national campaign targeting primary physicians to inform their assessments of patients for cognitive impairment and encourage referrals to clinical research.
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Disseminate ROAR toolkit, develop additional training material, and work with state and local aging services and public health providers to provide educational and training for their clients.
Summary of Key Accomplishments
In 2018, the NIA, in collaboration with several stakeholder organizations and researchers, developed and launched the National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research with a focus on recruitment of diverse populations. The National Strategy features recommendations for local and national outreach and education efforts with specific recommendations for action by a variety of stakeholders.
In 2019, NIA launched Alzheimer’s and Dementia Outreach, Recruitment, and Engagement Resources (ADORE), a searchable online toolbox that provides a wide range of materials to help researchers engage, recruit, and retain participants in clinical trials and studies. This database houses resources including journal articles, toolkits, and recruitment plans shared by NIA-supported Alzheimer’s Disease Research Centers and other agencies and organizations.
In 2021, NIA launched OutreachPro, an online tool that allows researchers and community organizations to easily produce a package of audience-specific, tailored materials and strategies that can be branded locally to increase participant recruitment in Alzheimer’s and related dementias clinical trials. Current activities are underway to produce and include information in multiple languages.
NIA also provides science-based information on brain health and cognition through its Cognitive Health and Older Adults portal. This information is updated on a regular basis to include the latest information based on NIA-funded research.
In addition, the Recruiting Older Adults into Research (ROAR) toolkit, a joint project between multiple federal agencies, was designed to encourage older adults and their family caregivers to consider participating in research. It is freely available on the NIA website.
The key accomplishments summary is current as of March 2022.
Accomplishments/Implementation Activities
Funding Initiatives
- PAR-15-349: Health Disparities and Alzheimer's Disease (R01)
- PAR-15-350: Emerging Directions for Addressing Health Disparities in Alzheimer's Disease (R03)
Research Programs and Resources
- National Strategy for Recruitment and Participation in Alzheimer's and Related Dementias Clinical Research
- Recruiting Older Adults into Research (ROAR) Toolkit
- NIA Alzheimer’s and Related Dementias Clinical Trials Finder and Information on Participation
- The Role of Physician Networks on Racial Disparities in Intensity of Care for Dementia Patients
- Old School Hip Hop: A Randomized Controlled Trial to Improve Dementia Knowledge
- Decadal Survey of Behavioral and Social Science Research on Alzheimer's Disease and Alzheimer's Disease-Related Dementias Advisory Panel comprised of persons living with dementia (PLWD) and caregivers of PLWD
- A Summary of Commentaries Submitted by Those Living with Dementia and Care Partners
- National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers
- Cognitive Aging: Progress in Understanding and Opportunities for Action
- Cognitive Health and Older Adults Portal