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Advisory Council April 2016 Meeting Presentation: Research Subcommittee Recommendations

Friday, April 29, 2016


2016 Research Subcommittee Recommendations

Ron Petersen

Research Subcommittee Members

  • Richard Hodes
  • Laura Gitlin
  • Angela Taylor
  • Harry Johns
  • Billy Dunn
  • Jane Tilly
  • Shari Ling
  • Joan Weiss
  • Ron Petersen

Recommendation 1

  • Continue to provide a robust, comprehensive, and transformative scientific roadmap for achieving the goal of preventing, effectively treating and providing effective care and services for Alzheimer’s disease and related disorders by 2025
    • Roadmap should include input from experts in the field through research summits on AD and AD-related dementias including a research summit on care and services
    • Recommendations from summits and the research community should be re-evaluated each year and translated into milestones
    • Include specific research milestones to:
      • Reduce racial/ethnic/socioeconomic disparities in Alzheimer's disease and related dementias
      • Make significant improvements in research recruitment rates and outreach among diverse populations
      • Re-evaluate priorities among AD and related dementias across all research areas
      • Include and prioritize specific milestones for populations at high risk for AD
      • Increased attention on person-centered outcomes, specifically research planning and the delivery of care and services

Recommendation 2

  • Increase annual federal research funding sufficient to meet the 2025 goal
    • Initial estimates of that level are $2 billion/yr. but may be more; would be applied to AD research intiatives spanning basic, translational, clinical, care and services.
    • Annual research funding target should be dynamically modified to approximate 1% of the cost of caring for persons with AD and related dementias.
    • Annual professional judgment budget should reflect science-driven funding needs for budget year to enable investigators to reach 2025 goal of the plan.

Recommendation 3

  • Develop research goals aimed at the establishment of evidence-based recommendations to improve delivery of care and services
    • Enhance methodologies to effectively engage persons with dementia and families in care decision making and planning
    • Develop and implement quality care measures across all settings that include person-centered outcomes
    • Identify and evaluate (non-drug) care strategies that reduce disease burden and delay disease progression and evaluate their costs and downstream effects

Recommendation 4

  • Standardization of terminology in dealing with cognitive and dementing disorders
    • Convene an integrated conference to develop consistent language for cognitive disorders among the scientists, care providers and public
    • Engage all stakeholders around these issues to reach a consensus for the benefit of persons with dementia, their family members and caregivers and the scientific and service communities

Recommendation 5

  • US Government should support global efforts to address issues of research, care and services as recommended in the National Plan
    • US public and private entities should acknowledge and scrutinize the work of the World Dementia Council
    • Promote continued collaborations on international research efforts