April 19, 2024
National Institute on Aging (NIA)
The purpose of this Request for Information (RFI) is to solicit comments and suggestions for the National Institute on Aging (NIA) to consider as it explores strategies relevant to its ongoing implementation of the National Institutes of Health (NIH) Data Management and Sharing (DMS) Policy. NIA seeks public input on challenges, opportunities, and use-cases related to data management, sharing, and secondary use of scientific data related to Aging and Alzheimer's disease (AD) and AD-related dementias (ADRD) research, needs of investigators supported through the NIA, and strategies that can be capitalized upon to address these needs. The goal is to develop an overarching NIA data strategy that informs NIA programs and policies, and addresses gaps in the existing data ecosystem and sociocultural barriers to data sharing and use.
NIA wishes to engage a wide variety of stakeholders, including the following:
NIA solicits information from all interested respondents, including the following:
NIA solicits information on both the current data ecosystem and additional resources needed to fully benefit from the rich data produced by NIA-funded research.
The NIH issued a DMS policy, effective on January 25, 2023, which applies to all research, funded or conducted in whole or in part by NIH, that results in the generation of scientific data. This includes research funded or conducted by extramural grants, contracts, Intramural Research Projects, or other funding agreements regardless of NIH funding level or funding mechanism. The policy establishes the expectation to maximize the appropriate sharing of scientific data and encourages sharing consistent with findable, accessible, interoperable, and reusable (FAIR) data principles. Under the new DMS policy, NIH-supported investigators should prospectively plan for the managing and sharing of scientific data, submit a DMS plan and comply with the approved plan, including budgeting appropriately for DMS activities. Shared scientific data should be made accessible as soon as possible, and no later than the time of an associated publication, or the end of performance period, whichever comes first. DMS Plans are recommended to address six elements, and a DMS format page is provided to help investigators respond to the policy. The policy applies to many, but not all, activity codes, covering a broad range of data types, including biological, phenotypic, imaging, -omics data, clinical studies results, social and behavioral data, surveys, questionnaires, surveillance data, and related metadata and programming code.
NIA invites comments on notable strategies for DMS, legal, ethical, sociocultural, or technical barriers that limit data sharing and preservation, as well as unmet gaps and needs. Comments are invited from all interested respondents, including individuals who have shared primary research data, those who have used research data to conduct secondary data analyses, research networks and consortia who provide data sharing resources, and academic research institutions, research professional societies, and organizations that represent the interests of U.S.-based and international NIA-supported researchers.
Respondents should not feel compelled to address all items listed below. Comments may address, but are not limited to, the following topics:
Responses to this RFI may be submitted using the response form. To ensure consideration, responses must be submitted by May 31, 2024.
Response to this RFI is voluntary. You may voluntarily include your name and contact information with your response. Responders are free to address any or all the topics listed above and/or to provide feedback on any relevant issues. The submitted information will be reviewed by NIH staff.
This request is for information and planning purposes only and should not be construed as a solicitation or as an obligation on the part of the Federal Government. The NIH does not intend to make awards based on responses to this RFI or to otherwise pay for the preparation of any information submitted or for the Government's use of such information.
The NIH will use the information submitted in response to this RFI at its discretion and will not provide comments to any responder's submission. The information provided will be analyzed and may be aggregated in presentations and reports. Respondents are advised that the Government is under no obligation to acknowledge receipt of the information received or provide feedback to respondents with respect to any information submitted. No proprietary, classified, confidential, or sensitive information should be included in your response. The Government reserves the right to use any non-proprietary technical information in any resultant solicitation(s).
Please direct all inquiries to:
National Institute on Aging
The contacts below can be reached by email at NIARFIresponse@mail.nih.gov.
Division of Behavioral and Social Research
Partha Bhattacharyya, Ph.D.
Rebecca Krupenevich, Ph.D.
Division of Geriatrics and Clinical Gerontology
Rosaly Correa-De-Araujo, MD, MSc, Ph.D.
Beth Wilmot, Ph.D.
Division of Aging Biology
Jennifer Fox, Ph.D.
Yi-Ping Fu, Ph.D.
Division of Neuroscience
Mette Peters, Ph.D.
Luci Roberts, Ph.D.
Intramural Research Program
Dr. Shepherd Schurman
Dr. Eleanor Simonsick