October 19, 2021
National Institute of Neurological Disorders and Stroke (NINDS)
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 and Alzheimer's disease-related dementias (AD/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. This continued in March 2019 with ADRD Summit 2019. This resulted in a total of 37 new or revised research milestones for Health Equity, Multiple Etiology Dementias, FTD, VCID, LBD and Emerging Topics.
The purpose of this time-sensitive Request for Information (RFI) is to seek input from scientists, clinicians, patients, families, caregivers, advocates, and the broader dementia community on the most important needs and promising opportunities for Alzheimer's disease-related dementias (ADRD) research. The information submitted in response to this RFI will be used by committees of scientists, clinicians, and other members of the public to revise and update the ADRD 2019 research recommendations. The draft recommendations will be presented to the public for further input at ADRD Summit 2022, which will take place on March 22-23, 2022.
Information Requested
The National Institute of Neurological Disorders and Stroke 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 2019 Summit and became the ADRD research milestones in the National Plan to Address Alzheimer's disease. The milestones can be found here: https://aspe.hhs.gov/collaborations-committees-advisory-groups/napa/napa-documents/napa-research-milestones/adrd-summit-2019-prioritized-research-milestones. Information you provide will be used to inform the new and revised research milestones that will be generated from ADRD 2022.
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 2019, 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 towards the milestones
How to Submit a Response
To assure full consideration, your responses must be received by December 20, 2021. 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.
Rod Corriveau, PhD
National Institute of Neurological Disorders and Stroke (NINDS)
Email: [email protected]
and Human Services (HHS)
