Advisory Council July 2018 Meeting Presentation: ADRD Research Update

07/30/2018

ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES

Friday, July 30, 2018

Printer Friendly Version in PDF Format (11 PDF pages)

 

Alzheimer's Disease and Related Dementias Research Update

Richard Hodes, M.D.
Director, NIA

 

AD/ADRD Research Implementation Milestones and Bypass Budget Process

NIH Research Implementation Milestones are Based on Broad Input

  • 2011
    • The National Alzheimer's Project Act (NAPA) was signed into law in January -- updated annually
  • 2012 AD Summit
  • 2013 ADRD Summit
  • 2014
  • 2015 AD Summit
  • 2016 ADRD Summit
  • 2017 AD Care/Services Summit
    • Newest sources of milestone input
  • 2018 AD Summit
    • Newest sources of milestone input
  • 2019 ADRD Summit
  • 2020 AD Care/Services Summit

https://www.nia.nih.gov/alzheimers/milestones

What Counts as AD/ADRD Research?

  • The AD/ADRD pay line applies to applications/awards that are coded as AD or Alzheimer's disease- related dementias (ADRD)
  • The ADRD RCDC categories that report related dementias specifically named in the National Plan to Address Alzheimer's Disease are:
    • Lewy Body dementia (LBD)
    • Frontotemporal dementia (FTD)
    • Vascular Cognitive Impairment/Dementia (VCI/D)

Combined External and Internal Input -- FY20 AD/ADRD Bypass Budget

  • Input at 2012-2018 meetings:
    • Academic research community
    • Industry
    • Non-governmental organizations
  • Other Input:
    • 2017 Request for Information
  • Development of comprehensive milestones (NIH staff) -- based on summit and other input
  • Trans-NIH (including NINDS) staff discussion; milestones edited to ensure comprehensive inclusion of priorities for FY20
  • NIH staff "price" the milestones
  • Final budget estimate for FY20

Bypass Budget Language

SEC. 230. Hereafter, for each fiscal year through fiscal year 2025, the Director of the National Institutes of Health shall prepare and submit directly to the President for review and transmittal to Congress, after reasonable opportunity for comment, but without change, by the Secretary of Health and Human Services and the Advisory Council on Alzheimer's Research, Care, and Services, an annual budget estimate (including an estimate of the number and type of personnel needs for the Institutes) for the initiatives of the National Institutes of Health pursuant to the National Alzheimer's Plan, as required under section 2(d)(2) of Public Law 111-375.

Trans-NIH Input for FY20 ADBB

  • Thirteen Institutes and Centers provided feedback that contributed to the development of this year's professional judgment budget:
    • NIA
    • NINDS
    • NHLBI
    • NIAAA
    • NICHD
    • NIDCR
    • NIDDK
    • NIEHS
    • NIGMS
    • NIMH
    • NINR
    • NCATS
    • FIC

Using CADRO as a Framework

  • The eight CADRO (Common Alzheimer's Disease Research Ontology) categories provide the overarching framework for the FY20 AD Bypass Budget and narrative.
  • CADRO provides the framework for IADRP (the International Alzheimer's Disease Research Portfolio) and will allow tracking of implementation in the budget areas in future years.

FY20 Professional Judgment Budget -- Additional Funding Needs

Molecular Pathogenesis and Pathophysiology of Alzheimer's Disease $82,000,000
Diagnosis, Assessment, and Disease Monitoring $24,000,000
Translational Research and Clinical Interventions $138,000,000
Epidemiology $51,000,000
Care and Caregiver Support $26,215,000
Research Resources $107,100,000
Alzheimer's Disease-Related Dementias $45,687,500
Staffing Needs and Administrative Support $3,710,000
ADDITIONAL FY20 Resources Needed for New AD/ADRD Research $477,712,500

Distribution of Additional Budget Funding Request Across Research Areas, FY20

TOTAL: $477,713,500
Pie chart: Epidemiology ($51,000,000, 11%); Care and Caregiver Support ($26,215,000, 5%); Research Resources ($107,100,000, 22%); ADRD ($45,687,500, 10%); Staffing Needs and Administrative Support ($3,710,000, 0.8%); Molecular Pathogenesis and Pathophysiology of AD ($82,000,000, 17%); Diagnosis, Assessment, and Disease Monitoring ($24,000,000, 5%); Translational Research and Clinical Interventions ($138,000,000, 29%).

FY20 Professional Judgment Budget -- Total Funding Needs

FY19 President's Budget Request for AD/ADRD Research (Baseline estimate) $1,516,000,000
Difference between the FY19 President's Budget Request and FY18 Omnibus Appropriation for AD/ADRD Research $399,000,000
ADDITIONAL FY20 Resources Needed for New AD/ADRD Research $477,712,500
TOTAL FY20 Resources Needed for AD/ADRD Research $2,392,712,500

Timing of ADBB Releases and AD/ADRD Appropriations

  • FY17 AD/ADRD milestones -- $323M extra needed
    • FY17 ADBB Released July 2015
    • $350M in FY16 supports acceleration of FY17 milestones
  • FY18 AD/ADRD milestones - $414M extra needed
    • FY18 ADBB Released August 2016
    • $400M in FY17 supports acceleration of FY18 milestones
  • FY19 AD/ADRD milestones - $597M extra needed
    • FY19 ADBB Released July 2017
    • $414M in FY18 supports acceleration of FY19 milestones
  • FY20 AD/ADRD milestones - $478M extra needed
    • FY20 ADBB Released July 2018

AD/ADRD Progress Report -- An important part of the ADBB

  • The AD/ADRD Bypass Budget narrative includes many examples of recent science advances across multiple research topics -- basic to clinical, care/caregiving, etc.

Implementation Tracking

  • IADRP: http://iadrp.nia.nih.gov/
    • Will continue to offer detailed tracking of initiatives and awards with respect to our research milestones, under the CADRO categories
  • Web-based tool for tracking funding initiatives and activities: https://www.nia.nih.gov/alzheimers/milestones
    • Developed by the NIH and other AD funding organizations
    • Aimed at addressing the research milestones associated with NAPA

Complex Considerations for this and Future Bypass Budgets

  • Past/current appropriations, including funds that have allowed us to address milestones "in advance"
  • Progress on milestones -- what have we accomplished? what new milestones are emerging?
  • Incorporating new milestones, including focus on care/services, target identification and drug development
  • Emerging investments by other groups -- what gaps are best filled by the NIA/NIH?
  • Successes in recruiting new and established researchers to AD/ADRD research and capacity of the field

 

Other Updates

FY19 Budget Status

  • FY19 Appropriations bills include additional NIH/NIA funds above FY18 levels
    • Senate
      • $3.08 Billion total for NIA
      • ($2.34 Billion total for AD/ADRD)
    • House
      • $3.01 Billion total for NIA
      • ($2.25 Billion total for AD/ADRD)

NEW Planned Evidence Review: Care Interventions for Individuals with Dementia and Their Caregivers

  • Two parts:
    • National Academies of Sciences, Engineering, and Medicine: Expert panel input on questions and study design www.nationalacademies.org/dementiacare
    • Agency for Healthcare Research & Quality: Evidence review
  • Status:
    • AHRQ Evidence-Based Practice Center award in process
    • NASEM Committee in final stages of vetting -- will be posted to the URL above when available

Eureka Prize Planning

  • The 21st Century Cures Act directed the NIH to use its authority to establish Eureka prize competitions in the areas of biomedical science that could improve health outcomes in conditions that represent a serious and significant disease burden
  • NIA is in the process of planning an AD/ADRD focused prize competition targeted towards technological innovations in care coordination and navigation
  • We have solicited public input at various stages of the planning process and anticipate announcing the competition later this fiscal year

We have solicited public input at various stages of the planning process and anticipate announcing the competition later this fiscal year

  • Alzheimer's Disease-Related Dementias (ADRD) NGO Roundtable
    • June 22, 2018 on the NIH Campus in Rockville, MD
    • Participants: NINDS and NIA leadership, program staff, and 7 ADRD-related NGOs
    • Provided updates on ADRD research activities and discussed opportunities for potential collaboration, including planning for next ADRD Summit in 2019
  • Save the date!
    • ADRD Summit (III)
    • March 14-15, 2019
    • Location: Natcher on the NIH Main Campus, Bethesda MD

Save the Date

  • ADRD Summit I May 2013
  • ADRD Summit II March 2016
  • Alzheimer's Disease-Related Dementias (ADRD) Summit III March 14-15, 2019 Bethesda, MD

Additional Save the Date

AD/ADRD Care/Services Summit (II)
March 24-25, 2020
Natcher Conference Center

Bethesda, MD


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