Notice Number: NOT-NS-19-011
Release Date: October 29, 2018
Response Date: December 20, 2018
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 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 resulted in a total of 37 new or revised research milestones for Lewy body dementia (LBD), frontotemporal degeneration (FTD), multiple etiology dementias (MED), and vascular contributions to cognitive impairment and dementia (VCID), including recommendations for cross-cutting topics such as health disparities in dementia and dementia nomenclature.
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 2016 research recommendations. The draft recommendations will be presented to the public for further input at ADRD Summit 2019, which will take place on March 14-15, 2019, on the main NIH campus in Bethesda, MD. (Register to attend ADRD 2019 at https://meetings.ninds.nih.gov/?ID=21149. Registration is free and open to the public.)
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 2016 Summit and became the ADRD research milestones in the National Plan to Address Alzheimer's disease. The milestones can be found at https://aspe.hhs.gov/alzheimers-disease-related-dementias-adrd-summit-2016-prioritized-research-milestones. Information you provide will be used to inform the new and revised research milestones that will be generated from ADRD 2019.
How to Submit a Response
To assure full consideration, your responses must be received by December 20, 2018. Responses to this RFI must be submitted via email to ADRD2019@ninds.nih.gov with "ADRD Summit RFI" in the subject line.
Responses to this RFI are voluntary. Submitted information will not be considered confidential. Proprietary, classified, confidential, or sensitive information should not be included in your response. The United States (U.S.) Government reserves the right to use any non-proprietary technical information in any resultant solicitation(s).This RFI is for planning purposes only and is not a solicitation for applications or an obligation on the part of the U.S. Government to provide support for any ideas identified in response to it. Please note that the U.S. Government will not pay for the preparation of any comment submitted or for its use of that comment. The NIH will use the information submitted in response to this RFI at its discretion and will not provide individual feedback to any responder. The information provided will be analyzed and may appear in reports.
Please direct all inquiries to:
Sophia Jeon, Ph.D.
National Institute of Neurological Disorders and Stroke (NINDS)