National Plan to Address Alzheimer's Disease: 2018 Update. Strategy 1.A: Identify Research Priorities and Milestones

10/19/2018

Research agencies undertake research planning processes on an ongoing basis, but a special effort is needed to identify the priorities and milestones to achieve Goal 1. The actions below will identify the priorities, establish milestones, and ensure that appropriate stakeholders are involved in the planning process aimed at minimizing AD/ADRD as a health burden by 2025. During the course of this work, National Institutes of Health (NIH) and partner agencies will develop research priorities, and a plan for implementing each phase of research in a coordinated manner.

(UPDATED) Action 1.A.1: Regularly convene an Alzheimer's disease research summit to update priorities

In the spring of 2018, the NIH Alzheimer's Disease Research Summit 2018: Path to Treatment and Prevention expanded on the research agenda set in place at the first two of such summits held in 2012 and 2015. The 2018 gathering brought hundreds of experts in AD and other chronic diseases together to identify critical knowledge gaps and set priorities for the kinds of new resources, infrastructure, and multi-stakeholder partnerships needed to fully realize emerging research opportunities.

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(UPDATED) Action 1.A.2: Solicit public and private input on Alzheimer's disease research priorities

National research summits (including the Alzheimer's Disease Research Summit, Alzheimer's Disease-Related Dementias Summit, and National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers, on a rotating basis) are held yearly to gather scientific input. These larger meetings take place in addition to smaller workshops, scientific gatherings, and requests for information which help gather community input. These contributions all factor into NIH's research plan for the 2025 goal, which is outlined as a series of research implementation milestones. This planning process and its systematic updates have informed the research community about NIH's interests and priorities in funding projects in AD/ADRD.

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(ONGOING) Action 1.A.3: Regularly update the National Plan and refine Goal 1 strategies and action items based on feedback and input

HHS and its federal partners will use the input received through the Research Summits on AD, ADRD, and now Care and Services to inform implementation of the National Plan. An updated Goal 1 will reflect the priorities, milestones, and timeline elements identified through these processes to accelerate research in this area. These will be incorporated into the next iteration of the National Plan and will be updated on an annual basis with the input of the Advisory Council.

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(ONGOING) Action 1.A.4: Update research priorities and milestones

To ensure that the research priorities and milestones reflect the broad input of the scientific community and the public, one Advisory Council meeting per year will be focused on this area. A relevant subcommittee focused on research or Goal 1 will collect input and recommend priorities and milestones for consideration by the Advisory Council as official recommendations. As appropriate, researchers in the field will also be invited to present at these meetings.

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(UPDATED) Action 1.A.5: Create a timeline with milestones for achieving Goal 1

Since the advent of the National Plan, NIH's planning process for research on AD/ADRD has expanded in inclusion and scope among NIH Institutes and Centers and stakeholders across the scientific and care communities. Hearing a diversity of expertise and opinions is critical to updating research recommendations based on an open review of scientific progress. It also ensures prioritization based on important scientific questions that must be answered to advance our understanding of these complex disorders and helps identify how federal and other public and private organizations can most effectively collaborate to address research priorities. Ultimately, the consultations and recommendations from the various research summits result in the formation and/or update of implementation research milestones that set forth activities through fiscal year (FY) 2025 to address the ultimate goals of the National Plan. The latest of these updates took place after the third Alzheimer's Disease Research Summit in April 2018.

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(ONGOING) Action 1.A.6: Regularly convene an Alzheimer's disease and related dementias summit to review progress on research recommendations, and refine and add new recommendations as appropriate, based on recent scientific discoveries

The National Institute of Neurological Disorders and Stroke (NINDS) is planning the third ADRD Summit which will be held on March 14-15, 2019. As in the past, researchers, clinicians, patients, caregivers, families, and advocates will gather to assess scientific progress and update and/or generate ADRD research recommendations. NIH continuously develops research initiatives and activities to address the research priorities identified through the previous ADRD Summits in 2013 and 2016.

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(COMPLETED) Action 1.A.7: Convene a workshop to examine the special needs of people with Down syndrome, who are at high risk for developing Alzheimer's disease and related dementias

To better understand AD in people at risk for developing the condition, NIH supported the Advancing Treatment for Alzheimer Disease in Individuals with Down Syndrome workshop in April 2013 to identify research recommendations and priorities for this population. The workshop was co-sponsored by a number of agencies and organizations including The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute on Aging (NIA), NINDS, Down Syndrome Research and Treatment Foundation (DSRTF), and Research Down Syndrome (RDS). The workshop brought together approximately 50 stakeholders to discuss partnerships involving the AD and Down syndrome research community, efforts that have been sustained over the past 4 years. NIA and NICHD collaborated to produce and disseminate information for people with Down syndrome and their families on the interplay of these conditions and the importance of participating in research. Efforts include a fact sheet, "Alzheimer's Disease in People with Down Syndrome", and outreach via email and social media.

The Alzheimer's Biomarker Consortium -- Down Syndrome aims to identify biomarkers that indicate AD is developing or progressing and track the AD process in people with Down syndrome. Additionally, NIA is currently funding a Phase I clinical trial to investigate the safety and tolerability of an immunotherapy vaccine for treatment of AD in adults with Down syndrome.

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(NEW) Action 1.A.8: Regularly convene a Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers

Driven by NAPA to expand research to support people living with dementia, the first-ever National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers was convened in October 2017. Hosted by NIH and led by the Office of the Assistant Secretary for Planning and Evaluation (ASPE) and the Advisory Council, the Summit aimed to set priorities for future care and caregiving research. The goal was to identify what we know and what we need to know to accelerate the development, evaluation, translation, implementation, and scaling up of comprehensive care, services, and supports for persons with dementia (PWD), families, and other caregivers. More than 1,000 people participated either in person or via videocast in the 2-day meeting. The meeting resulted in the generation of nearly 700 draft recommendations; summit leadership condensed these into 58 final recommendations. A final report, including these recommendations, was issued on April 27, 2018, and will help inform NIA investments and priority setting.

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