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Advisory Council February 2014 Meeting Presentation: Recruiting Older Adults into Research

Monday, February 3, 2014

Recruiting Older Adults into Research (ROAR)

Centers for Disease Control and Prevention
National Institute on Aging
Administration for Community Living


  • …aims to engage older adults, including those of diverse ethnic and racial backgrounds, to volunteer for participation in clinical research… (starting with Alzheimer's research)
  • …using Aging Services and Public Health networks as trusted sources of information…
  • …thereby helping to accelerate scientific discovery.

ROAR and Current Initiatives

  • National Plan to Prevent Alzheimer’s Disease
    • Action 1.B.3: Increase enrollment in clinical trials and other clinical research through community, national, and international outreach
    • Action 2.A.5: Strengthen state aging and public health workforces
    • Action 1.B.4: Monitor and identify strategies to increase enrollment of racial and ethnic minorities in Alzheimer's disease studies
    • Action 2.A.9: Engage the public health workforce on brain health
  • The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013-2018,
    • E-08: Promote appropriate partnerships and strategies to educate and increase local participation in clinical trials and studies on cognitive health and impairment.

ROAR Project Aims

  • Make it EASY: Simple call to action, using existing registry platforms
  • Engage trusted messengers: Involve the Aging Services and Public Health networks, who have high touch with diverse older adults and caregivers
  • Deliver simple, persuasive messages: Develop & test easy to use materials appropriate for Aging Services and Public Health
  • Measure impact: Use metrics built in to partner registries


Aging Services Public Health
Information & Assistance Community coalitions
Hotlines Health & Wellness Programs at Senior Centers & Nutrition Sites   Public health centers & clinics
Caregiver Support groups State/Local plans
Respite Educational programs
Aging & Disability Resource Centers Community health workers
Care Coordination, In-home Chore & Homemaker Programs Senior Health Officials/Public Health Administrators  
Senior Transportation & Home Delivered Meal Programs  

Partnerships across these networks and the Alzheimer’s Disease Centers at the local levels

Reaching Underrepresented Populations

Aging Services Public Health
  • 11,304,795 Total Clients
  • 2,879,521 Registered Services Clients
  • 25% of registered services clients are racial/ethnic minority  
  • 29.5% registered services clients below poverty
  • 37% rural
Survey of state health departments*:
  • 84% of agencies support health disparities or minority health initiatives
  • almost 3/4 work to address rural health issues
  • approximately 3/4 provide financial support to primary care providers in their state  
* Association of State and Territorial Health Officials (ASTHO) survey

Facilitated Connections Among Registries

  • ResearchMatch
  • Alzheimer's Prevention Regristry
  • Alzheimer's Association TrialMatch

Convened Thought Leaders

  • State Government:
    • Public Health Representatives
    • State Unit on Aging Representatives
  • Federal Government
  • Aging Services
    • Area Agencies on Aging
    • National Association of Area Agencies on Aging (n4a)
    • National Association of States United for Aging and Disabilities (NASUAD)
  • Public Health
    • National Association of Chronic Disease Directors (NACDD)
    • Association of State and Territorial Health Officials (ASTHO)
  • Research
    • NIA AD Center Education Core leaders
    • Resource Center for Minority Aging Research (RCMAR)
    • Alzheimer’s Disease Cooperative Study (ADCS)
    • Experts focused on recruitment of under-represented populations
  • Voluntary Health Organizations
    • Alzheimer’s Association
    • USAgainst Alzheimer’s
  • Registries
    • Research Match
    • Trial Match
    • Alzheimer’s Prevention Initiative

Developed Simple Call to Action

Finalizing Outreach Plan

ROAR Timeline

  • November 2013
    • Contact stakeholders: Invitations to thought leader meeting
  • December 2013
    • Identify sites for pilot testing materials
    • Develop sample materials for discussion at meeting
    • Thought Leader meeting
  • January 2014
    • Web page: PPT toolkit; Fact Sheet; User Guide
    • Begin pilot testing
    • Incorporate feedback
  • February 2014
    • Finalize plan for implementation during 2014
    • Implement plan

Future plans

  • Sustain ongoing interagency partnership
  • Build on momentum from ROAR collaborations to date (HHS Innovates and HHSIgnites Awards) and other current initiatives (NAPA, Brain Health)
  • Finalize action steps, messages and materials, roll out to interested sites
  • Engage additional partners, participating sites
  • Measure impact and revise strategy


  • Project Co-Lead: Amy Wiatr-Rodriguez, AoA/ACL
  • Project Co-Lead: Jennifer Watson, NIA/NIH
  • Angela Deokar, CDC
  • Kate Gordon, AoA/ACL
  • Hunter McKay, AoA/ACL
  • Nina Silverberg, NIA/NIH
  • Jane Tilly, AoA/ACL