NIH: Estimating the Monetary Costs of Dementia in the United States - fundsforNGOs

This Notice of Funding Opportunity (NOFO) invites applications that propose to develop national cost of illness estimates for the monetary cost of Alzheimer’s disease (AD) and AD-related dementias (ADRD) in the United States using a societal perspective.

Donor Name: National Institutes of Health (NIH)

State: All States

County: All Counties

U.S. Territories: American Samoa, Guam, Commonwealth of Puerto Rico, Commonwealth of the Northern Mariana Islands, U.S. Virgin Islands

Type of Grant: Grant

Deadline: 06/02/2024

Size of the Grant: $1,000,000

Grant Duration: 5 years

Details:

The purpose of this NOFO is to support the development of a national estimate of the costs of AD/ADRD using population-representative and administrative data on older Americans through a comprehensive process that uses a family and People Living With Dementia (PLWD) engagement panel and a Technical Monitoring Committee. Applicants must describe administrative and convening activities to guide cost estimate development and analyses.

Research Goals

The primary goal of this NOFO is to develop a publicly available and shareable research and data infrastructure that will generate cost of illness estimates for AD/ADRD in the United States from a societal perspective. The cost of illness estimates must be updatable with the input of additional data years and data sources. A secondary goal is to share the analytic code used to develop the cost estimates and foment the use of economic simulation models to assess payment policy changes and the health gains of treatment advances.

Research Objectives

This NOFO utilizes the U01 Research Project – Cooperative Agreements activity code. Under the Cooperative Agreement, the investigative team will:

Convene two engagement panels. The first panel, a family and people living with dementia (FPLWD) engagement panel, hereafter FPLWD Engagement Panel, will include a multifarious group of people, families, and caregivers with various perspectives on living with, and supporting those living with, AD/ADRD. The second panel, which will be called a Technical Monitoring Committee, will be comprised of economists, data scientists, and modeling experts to provide guidance to the study team on developing estimates of the cost of illness. It is not anticipated that there will be significant overlap between the activities of the FPLWD Engagement Panel and the Technical Monitoring Committee.
- FPLWD Engagement Panel: The goal of engaging FPLWD is to ensure that the challenges of finding, paying for, and maintaining treatment and care for AD/ADRD are adequately captured. Through the FPLWD Engagement Panel, FPLWD provide input on the services, treatments, and processes that cost them time and money to navigate, regardless of whether the care and treatment is paid for out of pocket or by other payers. FPLWD will have the opportunity to ground the study in lived experience. This Patient-Centered Outcomes Research Institute’s webpage is a possible source of patient and family engagement information.
- Technical Monitoring Committee: The goal of the Technical Monitoring Committee is to provide critical feedback to the study team on data sources, data access, data analysis, development of analytic models, and content of scientific manuscripts. The Technical Monitoring Committee supports the scientific rigor of the project. Potential Technical Monitoring Committee members must not be named or contacted during the application period, rather applicants are invited to describe their approach to establishing and engaging with the Technical Monitoring Committee.
Identify appropriate nationally representative longitudinal studies of older adults with data that can be linked to other datasets to create a dynamic linked dataset. These datasets will be used to calculate the cost of dementia care and treatment in the United States. This data source must be updated with additional data years no less than annually.
Obtain access to the data needed to conduct the study. The dataset(s) shall be housed in MedRIC.info or a similar NIA funded repository. The project shall complete all the necessary activities needed to obtain access to datasets.
Maintain an updated dataset suitable for modeling and simulations studies, which is updated no less than annually. The hosting for the dataset shall be provided by an NIA-funded contractor.
Using the selected data source(s), calculate the costs associated with care and treatment for PLWD. This analysis may include self-reported out-of-pocket spending and the utilization of nursing home care; Medicare claims data; Medicaid claims data; the value of hours of informal (unpaid) care; and/or value of the cost of equivalent formal (paid) care; and the estimated wages forgone by informal caregivers.
Post the analytic code used to produce the estimates in a publicly accessibly repository (hosted on, e.g., GitHub).
Prepare data briefs and other products with appropriate text to communicate the background, data, method, results, and implications of the study.
Prepare a scientific manuscript for publication in a scientific journal. This scientific manuscript shall be authored by the Principal Investigator (PI) and may include co-investigators and other researchers who meet the International Committee of Medical Journal Editors qualifications for authorship as co-authors.
Submit the manuscript, revise and resubmit if needed, and publish the results of the study in a scientific journal.
Conduct project management activities essential to study performance. Develop a milestone schedule to guide project execution. Specifically, the project shall ensure that the necessary project management activities required to implement the Cooperative Agreement, such as conception and initiation, project planning, project execution, performance/monitoring, and project completion are conducted. A study timeline and milestones must be submitted in the initial application to guide the study.
Conduct nationwide outreach to invite pilot project applications. The Cooperative Agreement must support pilot studies to conduct policy simulations and model enhancements. The study shall ensure that the tasks needed to invite, select, and mentor pilot investigators are undertaken. Any proposed approach must include the involvement of the NIA Program Official in the review and selection of pilot projects.

Funding Information

The budget for direct costs may not exceed $1,000,000 in any single year.

Project Period

The scope of the proposed project should determine the project period. The maximum project period is 5 years.

Eligible Organizations

Higher Education Institutions

Public/State Controlled Institutions of Higher Education
Private Institutions of Higher Education

The following types of Higher Education Institutions are always encouraged to apply for NIH support as Public or Private Institutions of Higher Education:

Hispanic-serving Institutions
Historically Black Colleges and Universities (HBCUs)
Tribally Controlled Colleges and Universities (TCCUs)
Alaska Native and Native Hawaiian Serving Institutions
Asian American Native American Pacific Islander Serving Institutions (AANAPISIs)

Nonprofits Other Than Institutions of Higher Education

Nonprofits with 501(c)(3) IRS Status (Other than Institutions of Higher Education)
Nonprofits without 501(c)(3) IRS Status (Other than Institutions of Higher Education)

For-Profit Organizations

Small Businesses
For-Profit Organizations (Other than Small Businesses)

Local Governments

State Governments
County Governments
City or Township Governments
Special District Governments
Indian/Native American Tribal Governments (Federally Recognized)
Indian/Native American Tribal Governments (Other than Federally Recognized)

Federal Governments

Eligible Agencies of the Federal Government
U.S. Territory or Possession

Other

Independent School Districts
Public Housing Authorities/Indian Housing Authorities
Native American Tribal Organizations (other than Federally recognized tribal governments)
Faith-based or Community-based Organizations
Regional Organizations
Non-domestic (non-U.S.) Entities (Foreign Institutions)

Foreign Institutions