Key Dates

Related Announcements

• October 19, 2021 - Request for Information (RFI): Soliciting Input on Priorities and Progress in Alzheimer’s Disease-Related Dementias Research see Notice NOT-NS-22-032

Issued by

National Institute of Neurological Disorders and Stroke (NINDS)

Purpose

Background

The National Plan to Address Alzheimer's Disease, mandated by the National Alzheimer's Project Act and annually updated since 2012, includes goals for the research, clinical care, and long-term services and support that are needed to meet the challenge of addressing Alzheimer's disease (AD) and Alzheimer's disease-related dementias (ADRD). Goal 1 of the National Plan is to prevent and effectively treat Alzheimer's disease and related dementias by 2025. To help achieve this goal, the National Institutes of Health (NIH) convenes triennial summits to develop recommendations for advancing research on AD and ADRD. Recommendations developed through these summits become part of the National Plan as prioritized research milestones to guide future NIH investments in AD/ADRD research.

In May 2013, the National Institute of Neurological Disorders and Stroke (NINDS), in collaboration with the National Institute on Aging (NIA), convened the first ADRD Summit, Alzheimer's Disease-Related Dementias: Research Challenges and Opportunities (ADRD 2013) that established prioritized recommendations for ADRD research. In March 2016, the second ADRD Summit, Alzheimer's Disease-Related Dementias Summit 2016 (ADRD 2016), assessed progress and updated the recommendations from the 2013 Summit. Progress assessments continued in March 2019 with ADRD Summit 2019. Most recently, the ADRD Summit 2022 was held in March 2022 and the evaluations conducted during Summit resulted in 52 new or revised research milestones for Health Equity (HE), Lewy body dementia (LBD), frontotemporal degeneration (FTD), multiple etiology dementias (MED), and vascular contributions to cognitive impairment and dementia (VCID), including recommendations for Emerging Topics (TDP-43 proteinopathy, Post-TBI AD/ADRD and Impact of COVID-19 on AD/ADRD Risk and Outcomes).

This time-sensitive Request for Information (RFI) aims to seek input from scientists, clinicians, patients, families, caregivers, advocates, and the broader dementia community on the most important needs and promising opportunities for ADRD research. The information submitted in response to this RFI will be used by committees of scientists, clinicians, and other public members to revise and update the ADRD Summit 2022 research recommendations. The draft recommendations will be presented to the public for further input at ADRD Summit 2025, which will occur on March 25-26, 2025, on the main NIH campus in Bethesda, MD. (Registration will be free and open to the public. For more information on the ADRD Summit 2025 see this site: https://www.ninds.nih.gov/news-events/events/adrd-summit-2025).

Information Requested

The NINDS invites all interested stakeholders, including scientists, health professionals, patients, families, caregivers, advocacy groups, the private sector, and the general public, to provide comments and suggestions regarding the ADRD research recommendations that came out of the 2022 Summit and became the ADRD research milestones in the National Plan to Address Alzheimer's disease. The milestones can be found here: ADRD Summit 2022 Research Milestones. The information you provide will be used to inform the new and revised research milestones that will be generated from ADRD Summit 2025. 

Please submit:

• comments and suggestions regarding the current ADRD research milestones -- examples include comments about how these current milestones could be revised, the most promising areas of research that the research community should focus efforts on based on knowledge gap or research needs, any new research questions that draft recommendations should address based on scientific progress we've made since ADRD Summit 2022, particular areas of ADRD research that the field has made most progress on, etc.
• any research activities your organization has supported that are in alignment with the ADRD research milestones or information on the progress your organization has made toward the milestones.

How to Submit a Response

To assure full consideration, your responses must be received by December 06, 2024. Responses to this RFI must be submitted via email to [email protected] with "ADRD Summit RFI" in the subject line.

Responses to this RFI are voluntary. Do not include any proprietary, classified, confidential, trade secret, or sensitive information in your response. The responses will be reviewed by NIH staff, and individual feedback will not be provided to any responder. The U.S. Government will use the information submitted in response to this RFI at its discretion.

This RFI is for information and planning purposes only and shall not be construed as a solicitation, grant, or cooperative agreement, or as an obligation on the part of the Federal Government, the NIH, or individual NIH Institutes and Centers to provide support for any ideas identified in response to it. The Government will not pay for the preparation of any information submitted or for the U.S. Government’s use of such information. No basis for claims against the U.S. Government shall arise as a result of a response to this request for information or from the Government’s use of such information. The provided information will be analyzed and may appear, in summary form, removing personally identifying or sensitive information, in reports or other publicly accessible resources.

Inquiries

Please direct all inquiries to:

Amber McCartney, PhD
National Institute of Neurological Disorders and Stroke (NINDS)
Email: [email protected]