Notice of Intent to Publish a Funding Opportunity Announcement for Consortium for Palliative Care Research Across the Lifespan (U54 Clinical Trial Required)

Key Dates

None

National Institute on Aging (NIA)

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

National Institute of Mental Health (NIMH)

National Institute of Neurological Disorders and Stroke (NINDS)

National Institute of Nursing Research (NINR)

National Cancer Institute (NCI)

This Notice informs the research community that the National Institute on Aging (NIA) and partnering Institutes, Centers, and Offices (ICOs) of the National Institutes of Health (NIH) intend to promote a new initiative to advance palliative care research by publishing a Notice of Funding Opportunity (NOFO). The NOFO will invite applications proposing the development of a specialized center. Henceforth, the center will be referred to as the “Consortium.” The aim of the Consortium will be to provide resources, expertise, and coordination to advance innovative, high-quality research on palliative care for those living with serious illnesses across the lifespan. This research infrastructure will encompass Alzheimer’s disease (AD) and AD-related dementias (ADRD), cancer, and other serious illnesses and populations relevant to the partnering ICOs. NIH currently funds many palliative care research projects across the ICOs, and there is a need for a structure to leverage synergies, coordinate efforts, develop the scientific workforce, and address remaining gaps in the field. 

This Notice is provided to allow potential applicants sufficient time to develop meaningful collaborations and responsive projects. This Notice encourages investigators with experience in palliative care research across the lifespan and across a range of serious illnesses and populations relevant to participating NIH ICOs, including AD/ADRD, cancer, and health disparities, to consider applying to the NOFO.

The NOFO is expected to be published towards the end of 2023 with an expected application due date early in 2024. Note that these time frames are simply estimations, and they may change. 

The NOFO will utilize the Specialized Center--Cooperative Agreement (U54) activity code, with an embedded R25 for Research Education (RL5), that allows for multiple core components and substantial scientific and programmatic involvement of NIH staff.

 Additional details regarding the NOFO are below.

Background

Palliative care aims to alleviate symptoms, deliver goal-concordant care, and facilitate care coordination for persons living with serious illness across the lifespan and has been associated with improved care quality and, in some cases, length of life. Due to the growing evidence on the positive impact of palliative care, many professional organizations recommend its delivery concurrently with disease-focused treatment. Equitable access to reliable high-quality palliative care for a range of serious illnesses across the life span is a growing public health priority. It is estimated that about 12 million adults and hundreds of thousands of children are living in the U.S. with serious illness, such as cancer, heart disease, kidney disease, or AD/ADRD, and many are living longer with disease. This problem is further exacerbated by the projected increase in older adults, the majority of whom will be living with multiple chronic conditions.

Advancing palliative care research is consistent with the missions of multiple NIH ICOs. For the purpose of this Notice, “palliative care research across the lifespan and a range of serious illnesses” is inclusive of all age groups, populations, and diseases and conditions of interest to the participating ICOs, including in geriatric, pediatric, neonatal, pregnant, and lactating populations, as well as for individuals living with AD/ADRD, cognitive impairment, cancer, mental health or psychiatric disorders, and serious heart, lung, blood, and sleep illnesses.

Given the trans-disciplinary nature of palliative care research for populations across the lifespan – spanning ages, conditions, specialties – there is a need for a coordinated research infrastructure to build a more inclusive and representative palliative care clinical workforce (AAHPM & The George Washington University Health Workforce Institute, 2016) and support innovative, high-quality palliative care research, including on health and healthcare disparities, to build a cumulative evidence base. Therefore, the purpose of the NOFO will be to invite applications for a Consortium to diversify, coordinate, integrate, and advance palliative care research across the lifespan. The resulting Consortium is intended to expand and intensify NIH’s investment in palliative care research across the lifespan.

Research Objectives

The overall goals of the Consortium are the following:

1. Create new scientific knowledge on delivery and outcomes of palliative care approaches across the lifespan and across a range of populations and serious illnesses. An important focus will be research to understand and address disparities in access, quality, and use of palliative care services for health disparities populations (as defined by the NIA Health Disparities Framework priority populations).
2. Foster development of early- and mid-career investigators pursuing research careers in palliative care as well as established investigators shifting to palliative care research, with a goal of diversifying and expanding the palliative care research workforce.
3. Serve as a national platform that provides resources and expertise to facilitate high-quality research on palliative care across the lifespan and across a range of populations and serious illnesses, including clinical trials, observational, quasi-experimental, and qualitative research.
4. Engage healthcare systems, including long term care settings; home- and community-based services organizations; and other community partners, to inform the design and conduct of palliative care research studies, including pragmatic clinical trials.
5. Disseminate research findings and their implications for clinical practice, methodologic approaches, best practices, toolkits, and other impactful resources for researchers, clinicians, patients, and other relevant audiences.

Applicants will be encouraged to address how the design and conduct of all activities of the Consortium will consider from the beginning how the resulting information, best practices, guidance, data, or other resources will be disseminated to the broader research community. The Consortium will be encouraged to interact with and leverage existing NIA- and NIH-supported networks and centers to create synergies while avoiding duplication of existing efforts, including, for example, the NIH Pragmatic Trials Collaboratory, AD/ADRD IMPACT Collaboratory, Cancer and Aging Research Group (CARG), Geriatric Emergency care Applied Research Network (GEAR), Clin-STAR, the Research Centers Collaborative Network (RCCN), the Collaborative Pediatric Critical Care Research Network, the Brain Donor Project, and other NIH-supported research infrastructures.

Organizational Structure

The Consortium will consist of six required components and up to four optional components. The following is a description of each component:

1. Leadership and Administrative Core (required): This core will maximize the overall impact of the Consortium by providing effective governance, leadership, and coordination for all components of the Consortium and ensure that strategies to address diversity, equity, inclusion, and accessibility (DEIA) are embedded throughout all Consortium activities.
2. Research Education Core (REC) (required): This core will facilitate the development of a diverse palliative care research workforce by supporting early- and mid-career REC Scholars in their career development and through other research experiences, mentoring activities, curriculum or methods development, courses for skills development, and/or outreach activities.
3. Pilot / Exploratory Studies Core (required): This core will support rigorous and innovative palliative care research informed by current research priorities, gaps, and opportunities to advance palliative care science and impact clinical practice by supporting pilot projects and exploratory studies.
4. Research Design and Methodology Core (required): This core will facilitate rigorous palliative care research by providing expertise, training, trial design resources, biostatistics and analysis guidance, support for community-based participatory research approaches, and other methodological support and consultation, including tools and best practices for recruitment and retention, particularly for underserved and underrepresented populations, and safety reporting guidance to pilot and exploratory study awardees and the broader Consortium community.
5. Measures and Measurement Development Core (required): This core will facilitate the advancement of a cumulative and integrated palliative care research knowledge base by supporting the development, testing, harmonization, and implementation of measures of key outcomes, including those that matter most to patients and caregivers.
6. Health Disparities Research and Community Engagement Core (required): This core will facilitate high-quality research to understand and address health disparities in palliative care access, use, and quality for health disparities populations and/or populations living in underserved areas and facilitate community-engaged research.
7. Optional Cores (optional): Applicants may propose up to four investigator-initiated cores that will benefit the overall Consortium. Applicants may want to consider topics such as the following:
   • Data science, including clinical informatics, interoperability (e.g., to improve data standardization across research studies, support data sharing).
   • Cost-effectiveness and health economics, as described in NOT-OD-16-025, and aligned with NIA’s research priorities (for example, see NIA AD/ADRD Research Implementation Milestone 13.P).
   • Bioethics (e.g., to develop ethics guidelines, particularly for situations in which the patient lacks capacity to consent).
   • Implementation and dissemination (e.g., summarize and disseminate evidence base and best practices for large scale, real-world implementation, ensure scalability of tools and methods).
   • Biostatistics and analysis (e.g., advancing knowledge of lessons learned from within-group analysis that better explains nuanced experiences within a particular group, rather than using classic between group analyses that may perpetuate assumptions about a specific population of the field of palliative care).

Funding Information

Public/State Controlled Institution of Higher Education
Private Institution of Higher Education
Nonprofit with 501(c)(3) IRS Status (Other than Institution of Higher Education)
Small Business
For-Profit Organization (Other than Small Business)
State Government
Indian/Native American Tribal Government (Federally Recognized)
County governments
Independent school districts
Public housing authorities/Indian housing authorities
Indian/Native American Tribally Designated Organization (Native American tribal organizations (other than Federally recognized tribal governments)
U.S. Territory or Possession
Indian/Native American Tribal Government (Other than Federally Recognized)
Regional Organization
Eligible Agencies of the Federal Government

Applications are not being solicited at this time. 

Inquiries

Please direct all inquiries to:
NIAPalliativeCareResearch@nih.gov

Alexis Bakos, Ph.D., MPH, RN
National Institute on Aging (NIA)
Telephone: 301-921-5970

Basil Eldadah, MD, Ph.D.
National Institute on Aging (NIA)
Telephone: 301-496-6761

Elena Fazio, Ph.D.
National Institute on Aging (NIA)
Telephone: 301-496-3131

Chandra Keller, EdD, MPH, MPP 
National Institute on Aging (NIA)
Telephone: 301-496-3137