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Advisory Council April 2015 Meeting Presentation: National Plan 2015 Update

Tuesday, April 28, 2015

National Plan to Address Alzheimer’s Disease: 2015 Update

Rohini Khillan
Office of Disability, Aging, and Long-Term Care Policy
HHS Office of the Assistant Secretary for Planning and Evaluation t

2015 Plan Update

  • Expected release in early May
  • New format: narrative format listing projects completed in 2014, as well as ongoing projects that have updates
  • More detailed look, at the activity-level, still available in the Implementation Milestones Appendix
  • More reference to related dementias and/or dementia generally in an effort to expand the focus of the Plan
  • Collaboration and identification of other federal partners doing relevant work
  • Many of the actions in the original Plan and 2014 update are ongoing, but if there are relevant updates, they are in the narrative

New Format

  • Increased Accessibility: Based on feedback from the public and discussions with federal members that the previous Plan format is hard to read and getting longer and more complicated as we add more activities
  • Reads more like a progress report, rather than a list of activities
  • Combines the old “Highlights” section with the Plan generally
  • Still organized by Goals and Strategies
  • Includes links to completed reports

Strategy 1.C: Accelerate Efforts to Identify Early and Presymptomatic Stages of Alzheimer’s Disease

Collaborating on biomarker research – One of the primary goals of the previously-noted Accelerating Medicines Partnership (AMP) is to identify and characterize biomarkers and targets for intervention. The Accelerating Medicines Partnership-Alzheimer's Disease (AMP-AD) Biomarkers Project is a consortium of three NIA-supported Phase II/III secondary prevention trials testing several anti-amyloid therapies. Imaging and fluid biomarker panels already included in these trials will be supplemented with tau PET imaging and novel fluid biomarkers.  

Tracking Biomarker Trajectories Over Time -- NIH-supported researchers continue to develop and refine biomarkers--brain imaging and tests of blood and other body fluids--as well as non-invasive measures to detect the onset and progression of Alzheimer’s disease. In 2014, a study of volunteers with the rare, familial early-onset form of Alzheimer’s participating in the NIA-supported Dominantly Inherited Alzheimer’s Network (DIAN) showed how cerebrospinal fluid (CSF) biomarkers changed as the disease progressed. The results suggest that neuronal death slows down during the later stages of Alzheimer’s disease, and that the use of neuronal death markers should be used with caution in tracking disease progression in clinical trials.  

Discovering biomarkers for ADRDs -- NINDS-funded researchers are creating a biomarker-based tool for predicting significant cognitive decline in people with Parkinson’s disease, and are working to enhance brain imaging techniques to make it possible to detect the earliest changes in the blood brain barrier, which may be an early sign of cognitive impairment and dementia. NIH is funding several large, collaborative projects on FTD that seek to improve diagnosis, identify preventive strategies and provide new insights into the genetics underlying this complex disorder. One component of these projects is to identify biomarkers that signal the onset and progression of FTD.

Highlights -- Goal 1

  • Research advances enabled by additional funding
  • AMP-AD Target Discovery and Preclinical Validation Project
  • Testing therapies at earliest stages of Alzheimer’s (A4 (Anti-Amyloid Treatment in Asymptomatic Alzheimer's) trial)
  • NINDS will convene the second ADRD Summit on March 29-30, 2016
  • International Alzheimer’s Disease Research Portfolio (IADRP)

Highlights -- Goal 2

  • GECs and professional education
  • Alzheimer's Disease Initiative - Specialized Supportive Services (ADI-SSS)
  • Geriatrics Workforce Enhancement Program (GWEP)
  • Alzheimer’s Disease Supportive Services Program (ADSSP)

Highlights -- Goal 3

  • Dementia-Capable Cultural Communities: ADI-SSS grantees in Minnesota
  • National Quality Forum project “Priority Setting for Healthcare Performance Measurement: Addressing Performance Measure Gaps for Dementia, including Alzheimer’s Disease.”
  • REACH into Indian Country
  • Long-Term Care Awareness Survey
  • National Partnership to Improve Dementia Care in Nursing Homes

Highlights -- Goal 4

  • Cognitive Health Awareness Campaign
  • ADI and ADSSP awareness and outreach
  • USA G7 summit -- International dementia research leaders (Feb 11)
  • WHO Summit in Geneva (March 16-17)

Highlights -- Goal 5

  • CDC Data Reports and Publications
  • Healthy People 2020

Tentative Plan for Summer 2015

  • In conjunction with federal colleagues and the HHS Strategic Planning team, clean up the Implementation Milestones (currently 22 pages)
    • We have 121 activities listed in the Plan currently
      • 50 completed
      • 56 ongoing
      • 15 not completed
    • Move completed activities and add new activities that build off completed ones
      • Now that we have completed X, what is the next step?
    • Consolidation of activities
      • Not just creating new activities for the sake of having new activities
    • Construct a timeline for ongoing projects

Timing of Recommendations

  • Having recommendations come out in January means they either come out too late to be considered for the budget that is released that same year, and too early to be considered for next fiscal year (waiting months)
  • Agencies need more lead time when determining how best to incorporate recommendations

The Budget Lifecycle

Timeline: Federal Agency leads to Budget Justification (Nov-Jan); leads to White House; leads to President's Budget (First Monday in Feb); leads to Congress; leads to Budget Resolution (April 15); leads to Appropriations (Before October 1); leads to Federal Agency; leads to Obligation (After Oct 1); leads to Treasury; leads to Payment; finally leads to Recipient.