November 15, 2023
National Human Genome Research Institute (NHGRI)
The purpose of this notice is to inform potential applicants that the National Human Genome Research Institute (NHGRI) will participate, effective immediately, in PAR-23-309, Health and Health Care Disparities Among Persons Living with Disabilities (R01 - Clinical Trials Optional)."
The following sections of PAR-23-309 have been modified (changes in italics) to reflect the participation of NHGRI in this NOFO.
Participating Organization(s)
National Institutes of Health (NIH)
Components of Participating Organizations
National Institute on Minority Health and Health Disparities (NIMHD)
National Eye Institute (NEI)
National Human Genome Research Institute (NHGRI)
National Institute on Aging (NIA)
National Institute on Alcohol Abuse and Alcoholism (NIAAA)
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Institute of Biomedical Imaging and Bioengineering (NIBIB)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
National Institute on Deafness and Other Communication Disorders (NIDCD)
National Institute of Neurological Disorders and Stroke (NINDS)
National Institute of Nursing Research (NINR)
National Cancer Institute (NCI)
All applications to this funding opportunity announcement should fall within the mission of the Institutes/Centers. The following NIH Offices may co-fund applications assigned to those Institutes/Centers.
Sexual and Gender Minority Research Office (SGMRO)
Office of Behavioral and Social Sciences Research (OBSSR)
Assistance Listing Number(s)
93.307, 93.173, 93.172, 93.865, 93.286, 93.361, 93.867, 93.273, 93.866, 93.399, 93.846, 93.853
Key Definitions
NIH-designated Populations Experiencing Health Disparities: Racial and ethnic minority populations, socioeconomically disadvantaged populations, underserved rural populations, sexual and gender minority groups, and people living with disabilities in the U.S.
Disability: The Americans with Disabilities Act broadly defines a disability as a "physical or mental impairment that substantially limits one or more major life activities (e.g., mobility, cognition, independent living, vision, and self-care) and the ADA Amendments Act of 2008 that added "major bodily functions", to "Major Life Activities." This funding opportunity focuses on persons across the lifespan with congenital, developmental, cognitive, and physical disabilities (e.g., Down's syndrome, cerebral palsy, or injury-related physical impairment or amputation), as well as adults with early or premature onset of a major physical disability – that causes long-term impairment or limit(s) functioning indefinitely.
Intersectional Approach: Intersectionality acknowledges that individuals have multiple, interconnected social identities (e.g., gender, racial group, class, sexual orientation, and disability), and these identities intersect to shape their unique experiences and positions within society. For example, intersectionality highlights how racial and ethnic minority persons living with a disability may experience a unique set of challenges that require a more comprehensive approach to addressing discrimination and promoting health equity. Taking an intersectional approach can better predict variations in health outcomes and determine individual or population needs, and ultimately lead to more inclusive and/or multi-level research.
Background
The population of persons living with disabilities in the United States is heterogeneous, estimated at 24-26% of adults and 4.3% of children from various backgrounds, life circumstances, and health conditions. Impaired mobility (13.7%), cognition (10.8%), and independent living (6.8%) are the most common disabilities among adults, and impaired cognition (4.4%) is most common among children. Data indicate that, on average, individuals living with disabilities have poorer health-related quality of life and overall health, as well as decreased healthy life expectancy and longevity compared with people without a disability. Adults living with disabilities have a higher prevalence of preventable, chronic, and complicating comorbidities compared with the overall adult population. Examples include obesity (38.2% versus 26.2%), tobacco smoking (28.2% versus 13.4%), diabetes (16.3% versus 7.2%), and heart disease (11.5% versus 3.8%). Among persons of childbearing age, 12% live with at least one disability and are at a higher risk for maternal morbidity and mortality. Additionally, the objective signs and subjective experiences of persons living with disabilities are often dynamic, changing in nature, quality, and severity over time.
Research Objectives:
The focus of this notice of funding opportunity (NOFO) is to emphasize research at the intersection of disabilities, race and ethnicity, and socioeconomic status (SES) in persons with developmental and physical disabilities. Among racial and ethnic minority groups, the prevalence of living with at least one disability is markedly greater in American Indian and Alaska Native (30%) and Black or African American (25%) populations compared to 20% of White persons. Irrespective of racial and ethnic group, economically disadvantaged persons with disabilities are more likely to experience diminished opportunities for effective independent living driven by factors such as unemployment, adverse living conditions, housing instability, food insecurity, transportation limitations, social isolation, disaster unpreparedness, and low quality of healthcare. Additionally, residents of underserved rural communities are 9% more likely to have any disability and 24% more likely to report having three or more disabilities compared with adults in urban areas. Individuals living with disabilities, who reside in rural areas may also face barriers to healthcare access, accessible transportation, and high-quality education, and vocational or rehabilitation services. Research among sexual and gender minority persons with disabilities is scarce, although it is likely that commonly experienced barriers to accessing culturally competent physical, psychiatric, and specialty healthcare are intensified.
Furthermore, adverse social determinants of health (SDOH) amplify the challenges of health and health-related quality of life (QoL) among youth and adults living with disabilities. Examples include lack of accessible transportation or building entry/navigation, discrimination related to ableism, and clinical misperceptions within healthcare systems that may greatly complicate healthcare access and quality. Moreover, inaccessible and/or non-adaptive clinical facilities, equipment, and communication mechanisms, as well as non-inclusive clinical care guidelines and procedures impede equitable access to appropriate healthcare or lead to erroneous attribution of symptoms related to the primary disability rather than a new or co-occurring diagnosis or health crisis. Greater study is needed to inform appropriate or adaptable clinical practice guidelines for persons living with disabilities with an intersectional lens, as well as to enhance the understanding of the health and health risk behaviors (e.g., alcohol and substance use, prescription misuse, self-injurious behaviors, and interpersonal violence) over the life course. Overall, more expansive research is needed to elucidate the discrete differences, areas of overlap, relationships among factors across the lifespan, and severity of health outcomes across and within populations with health disparities. Therefore, this funding opportunity strongly encourages collaborative, mechanistic, clinical, or interventional research, implementation or translational science, and/or the use of data science research approaches in intersectional areas of study.
Research Objectives:
The overarching goals of this funding opportunity are to support innovative research that focuses on the health (e.g., conditions, outcomes, trajectories, etc.) and healthcare (e.g., modalities systemic or structural factors, access/barriers, service delivery, care quality, utilization, etc.) of persons living with disabilities and the intersections with race and ethnicity, and SES. Research focused on intersections with sexual and gender minority self-identification, and living in underserved rural locations are also of interest.
Projects may include the study of comorbid or co-occurring conditions (e.g., acute infections or chronic diseases); adaptive and maladaptive behaviors; prevention of or interventions for health risks; tailored or innovative health care processes, structures, or systems; healthcare delivery model effectiveness; and clinicians and other health care workers practices and/or biases.
Applications are expected to provide a conceptual model that describes or hypothesizes causal pathways by which clinicians and other healthcare professionals, services, or systems engage persons with disabilities to mitigate health risks, improve health outcomes, reduce health disparities, or compliment health care system.
Applications are encouraged to address more than one level of analysis (e.g., individual, interpersonal, institutional, community, and policy levels), as illustrated in the NIMHD Research Framework. They should also consider factors that will facilitate or serve as barriers to sustainability and/or adoption of healthcare models, practices, or guidelines. Resulting research initiatives will support science that advances our understanding of and efforts to mitigate the underlying causes and pathways adversely impacting the populations of focus.
Research projects for this NOFO can consist of studies that are clinical science, behavioral, epidemiological, evaluative, or observational, as well as implementation studies, pragmatic trials, and cluster randomized trials to assess health care provision, models, delivery, services, and systems in metropolitan or rural areas, regionally, and/or nationally, including the U.S. territories. Projects can involve primary data collection and/or secondary analyses of linked datasets. Projects can include research collaborations across multiple health care settings and academic institutions.
Investigators are strongly encouraged to work collaboratively with community leaders, community-based organizations, and other relevant stakeholders and/or supporting persons with disabilities to support in-depth examination of physical, social, behavioral, ethical, structural, environmental, and policy factors. Community partnerships (e.g., tribal leadership, academic, private, safety-net health systems, community organizations, public health departments, state and local governments, health care professionals, faith-based organizations, and school or childcare settings) are strongly encouraged. Applicants proposing community-engaged research should document existing collaboration with or support from community organizations. Study budgets should provide appropriate levels of funding for community partners commensurate with the roles and level of effort of the community partners in research design and implementation, if applicable.
National Institute of Minority Health and Health Disparities (NIMHD)
The mission of NIMHD is to lead scientific research to improve minority health and reduce health disparities. For this funding opportunity, NIMHD priorities include research that employs an intersectional approach to the study of, or interventions targeting, the health and healthcare of persons living with disabilities. Areas of interest include, but are not limited to, the following:
Specific Areas of Research Interest for Participating Organizations:
National Cancer Institute (NCI)
The NCI is interested in promoting research that addresses access and barriers to the delivery and receipt of cancer care that contribute to health disparities for persons with physical and/or sensory disabilities (PWD). Our focus on PWD who have a pre-existing/pre-cancer physical and/or sensory (e.g., vision loss, hearing loss) disability. NCI seeks to generate new knowledge that will help mitigate the stigma of disability and improve access to and delivery of guideline-concordant cancer preventive care and treatment, and utilization of cancer services, particularly for PWD who are members of medically underserved minority or marginalized groups (e.g., racial/ethnic minorities, sexual and gender minorities). Applicants should consider the architectural/environmental, structural, interpersonal, and procedural barriers that limit access to guideline-concordant cancer care.
Research areas of interest include, but are not limited to the following:
National Eye Institute (NEI)
The mission of NEI is to eliminate vision loss and improve quality of life through vision research. NEI invites intersectional research applications that address the health and well-being for people with visual impairment (blindness and low vision) among populations with health disparities. More information regarding NEI priorities are detailed in the institutes strategic plan.
Areas of specific interest include but are not limited to the following:
The NEI will not support clinical trials that are greater than minimal risk on this funding opportunity. Minimal risk is defined as the probability and magnitude of harm or discomfort anticipated in the research are not greater in and of themselves than those ordinarily encountered in daily life or during the performance of routine physical or psychological examinations or tests. For additional information on NEI Clinical Trial policies, see NOT-EY-23-001. Applicants are strongly advised to reach out to the NEI Scientific Contact before submitting applications for guidance about NEIs interests and more information regarding clinical trial designations.
National Human Genome Research Institute (NHGRI)
NHGRI supports resources, approaches, and technologies that accelerate genomic research focused on the structure and biology of genomes; the genomics of disease; the implementation and effectiveness of genomic medicine; computational genomics and data science; the impact of genomic technology, advances, and implementation on health disparities and health equity; and ethical, legal, and social issues related to genomic advances. NHGRI recognizes the importance of diversity in the genomic workforce , without which the promise of genomics cannot be fully achieved.
In general, NHGRI supports studies that provide generalizable methods and knowledge. Approaches that are comprehensive across the genome or are generalizable across variants, tissues, diseases, or function may be in scope for NHGRI to the extent they address priority areas described in the NHGRI 2020 Strategic Vision and on the web pages for the research mission of NHGRIs Extramural Divisions and Offices:
Applications for studies relevant only to a particular disease or organ system should be directed to the appropriate Institute or Center. Applications whose primary scientific objective is to understand a single biological or behavioral process, the pathophysiology of a disease, or the mechanism of action of an intervention, will not be in scope for NHGRI.
Additionally, as described in NOT-HG-22-033, NHGRI strongly encourages that the request for an application requesting $500,000 or more in direct costs for any year be sent to the Scientific/Research Contact for PAR-23-309 at least eight weeks prior to the anticipated submission date.
National Institute on Aging (NIA)
The mission of NIA is to support and conduct genetic, biological, clinical, behavioral, social, and economic research on aging; foster the development of research and clinician scientists in aging; provide research resources; and disseminate information about aging and advances in research to the public, health care professionals, and the scientific community, among a variety of audiences.
NIA uses the definition of disability provided in the Americans with Disabilities Act and ADA Amendments Act of 2008 that added "major bodily functions", to "Major Life Activities".
NIA has the following research interests related to persons living with disabilities:
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases. In the context of this NOFO, the NIAMS is interested in intersectional research into improving the health and health care of individuals living with disability among populations that experience health disparities and are patients suffering from a disease within NIAMS core mission. The NIAMS will not support clinical trials through this NOFO. Applications involving clinical trials should instead be submitted to a NIAMS clinical trial specific NOFO (see Clinical Research Grants). Applicants are encouraged to consult with the appropriate NIAMS program staff about potential applications.
National Institute of Biomedical Imaging and Bioengineering (NIBIB)
This mission of the National Institute of Biomedical Imaging and Bioengineering (NIBIB) is to transform through engineering the understanding of disease and its prevention, detection, diagnosis, and treatment. NIBIB is interested in projects that address specific needs of populations with disabilities that are experiencing health disparities. Projects may span the development in research settings, validation, translation into clinical settings as needed, and incorporation of these solutions as endpoints into research protocols. Applications developing novel technologies should incorporate a universal design approach and those building on existing technologies should provide significantly improved accessibility and ease-of-use for all.
Research areas of special interest include, but are not limited to the following:
For applications proposing clinical trials, NIBIB funding of clinical trials will be in accordance with NOT-EB-21-005 NIBIB Guidance for Support of Clinical Trial Applications." Briefly, NIBIB will only support mission-focused early-stage clinical trial applications, i.e., feasibility, Phase I, first-in-human, safety, or other small clinical trials, that inform early-stage technology development. NIBIB will not support applications proposing pivotal, Phase II, III, IV, or trials in which the primary outcome is efficacy, effectiveness, or a post-market concern. Also, mechanistic trials are not supported unless the primary focus of the project is on technology development.
Applicants are strongly advised to reach out to the NIBIB Scientific Contact before submitting applications for guidance about NIBIBs interests and more information regarding clinical trial designations.
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
NICHDs mission is to lead research and training to understand human development, improve reproductive health, enhance the lives of children and adolescents, and optimize abilities for all. NICHD is interested in projects at the intersection of disability and individuals other identities, including how multiple identities might interact to exacerbate health disparities. Applications seeking to establish the efficacy or effectiveness of novel interventions should address scalability and sustainability and fully consider the context in which such interventions will be implemented. Visit https://www.nichd.nih.gov/about/org/der/branches and https://www.nichd.nih.gov/about/org/ncmrr for more information about NICHD research priorities.
Research areas of interest include, but are not limited to:
National Institute on Drug Abuse (NIDA)
The mission of NIDA is to advance science on the causes and consequences of drug use and addiction and to apply that knowledge to improve individual and public health. NIDA is interested in supporting research relevant to advancing the understanding of the effects of substance use among people living with disabilities and experiencing health disparities. This includes the identification and development of innovative strategies, prevention, and intervention methods, as well as policy changes to reduce negative effects of substance use among this population, specifically among racial and ethnic minorities, sexual and gender minorities, and other underserved populations. Priority areas include but are not limited to research on the following:
National Institute on Deafness and Other Communication Disorders (NIDCD)
NIDCD invites responsive applications addressing the needs of individuals with communication disorders, specifically those disorders that align with the Institutes scientific programs of hearing, balance, taste, smell, voice, speech, and language. For more information, please see: https://www.nidcd.nih.gov/about/strategic-plans Any applications proposing a clinical trial must meet ALL the following criteria: not require FDA oversight, are not intended to formally establish efficacy, and have low risks to potentially cause physical or psychological harm. Application funded by NIDCD should have budgets less than $500,000 direct costs per year.
National Institute of Neurological Disorders and Stroke (NINDS)
The National Institute of Neurological Disorders and Stroke (NINDS) is interested in applications within the NINDS mission (NINDS Disorders Index: https://www.ninds.nih.gov/health-information/disorders). NINDS aims to support multidisciplinary, community-engaged health equity research to identify develop, and evaluate strategies to improve outcomes specifically related to neurological disorders in people living with disabilities among populations experiencing health disparities. Specific areas of research interest include but are not limited to:
Clinical trials are research studies in which one or more human subjects are prospectively assigned to one or more interventions (which may include placebo or other control) to evaluate the effects of those interventions on health-related biomedical or behavioral outcomes. For this funding announcement, only Basic Experimental Studies with Humans (BESH) clinical trials, defined as basic research studies involving humans that seek to understand the fundamental aspects of phenomena will be supported by NINDS. Mechanistic clinical trials or clinical trials that seek to answer specific questions about safety, tolerability, clinical efficacy, effectiveness, clinical management, and/or implementation of pharmacologic, behavioral, biologic, surgical, or device (invasive or non-invasive) interventions, preventive, therapeutic, and services interventions will not be supported under this NOFO. Please refer to https://www.ninds.nih.gov/Funding/Find-Funding-Opportunities to find the appropriate NIH or NINDS-specific NOFO for such clinical trials. Applicants are strongly advised to consult with NINDS prior to submitting an application to this NOFO to determine the appropriate funding
National Institute of Nursing Research (NINR)
The NINR supports research to solve pressing health challenges and inform practice and policy – optimizing health and advancing health equity into the future. NINR discovers solutions to health challenges through the lenses of health equity, social determinants of health, population and community health, prevention and health promotion, and systems and models of care. Drawing on the strengths of nursings holistic, contextualized perspective, core values, and broad reach, NINR funds multilevel and cross-sectional research that examines the factors that impact health across the many settings in which nurses practice, including homes, schools, workplaces, clinics, justice settings, and the community. Observational, intervention, and implementation research are of interest.
Applications NOT responsive to this NOFO
Non-responsive applications will not be reviewed. Applicants are strongly encouraged to reach out to the relevant scientific contacts to discuss whether their applications are responsive.
See Section VIII. Other Information for award authorities and regulations.
Investigators proposing NIH-defined clinical trials may refer to the Research Methods Resources website for information about developing statistical methods and study designs.
We encourage inquiries concerning this funding opportunity and welcome the opportunity to answer questions from potential applicants.
Application Submission Contacts
eRA Service Desk (Questions regarding ASSIST, eRA Commons, application errors and warnings, documenting system problems that threaten submission by the due date, and post-submission issues)
Finding Help Online: https://www.era.nih.gov/need-help (preferred method of contact)
Telephone: 301-402-7469 or 866-504-9552 (Toll Free)
General Grants Information (Questions regarding application instructions, application processes, and NIH grant resources)
Email: [email protected] (preferred method of contact)
Telephone: 301-480-7075
Grants.gov Customer Support (Questions regarding Grants.gov registration and Workspace)
Contact Center Telephone: 800-518-4726
Email: [email protected]
Scientific/Research Contact(s)
Sundania J. W. Wonnum, PhD, LCSW
NATIONAL INSTITUTE ON MINORITY HEALTH & HEALTH DISPARITIES (NIMHD)
Email: [email protected]
Cheryse A. Sankar, PhD
National Institute on Neurological Disorders and Stroke (NINDS)
Phone: (301) 318-2889
E-mail: [email protected]
Laura Kwako, Ph.D.
National Institute on Alcohol Abuse and Alcoholism (NIAAA)
Telephone: 301-451-8507
Email: [email protected]
Cheri Wiggs
NEI - NATIONAL EYE INSTITUTE
Phone: (301) 402-0276
E-mail: [email protected]
Lucia Hindorff, Ph.D.
National Human Genome Research Institute (NHGRI)
Telephone: 240-271-1509
Email: [email protected]
Toyin Ajisafe, PhD
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Telephone: 301-827-9242
Email: [email protected]
Moria Fisher Bittmann
NIBIB - NATIONAL INSTITUTE OF BIOMEDICAL IMAGING AND BIOENGINEERING
Phone: none
E-mail: [email protected]
Christopher Barnhart, PhD
Sexual & Gender Minority Research Office (SGMRO)
Telephone: 301-594-8983
Email: [email protected]
Liz Perruccio, MS, PhD
National Institute of Nursing Research (NINR)
Telephone: 301-402-8084
Email: [email protected]
Yan Wang, MD, PhD
NIAMS - NATIONAL INSTITUTE OF ARTHRITIS AND MUSCULOSKELETAL AND SKIN DISEASES
Phone: 301-594-5032
E-mail: [email protected]
Holly Lynn Storkel
NIDCD - NATIONAL INSTITUTE ON DEAFNESS AND OTHER COMMUNICATION DISORDERS
Phone: 301.451.6842
E-mail: [email protected]
Priscilla Novak, Ph.D.
NATIONAL INSTITUTE ON AGING (NIA)
Phone: 301-496-3136
E-mail: [email protected]
Wendy Nelson
National Cancer Institute (NCI)
Phone: (240) 276-6971
E-mail: [email protected]
Peer Review Contact(s)
Examine your eRA Commons account for review assignment and contact information (information appears two weeks after the submission due date).
Financial/Grants Management Contact(s)
Priscilla Grant, J.D.
National Institute on Minority Health and Health Disparities (NIMHD)
Telephone: 301-594-8412
Email: [email protected]
Chief Grants Management Officer
National Institute of Neurological Disorders and Stroke (NINDS)
Email: [email protected]
Judy Fox
National Institute on Alcohol Abuse and Alcoholism (NIAAA)
Telephone: 301-443-4704
Email: [email protected]
Karen Robinson Smith
NEI - NATIONAL EYE INSTITUTE
Phone: 301-435-8178
E-mail: [email protected]
Deanna L. Ingersoll
National Human Genome Research Institute (NHGRI)
Telephone: 301-435-7858
Email: [email protected]
Margaret Young
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Telephone: 301-642-4552
Email: [email protected]
Mutema Nyankale
NIBIB - NATIONAL INSTITUTE OF BIOMEDICAL IMAGING AND BIOENGINEERING
Phone: (301) 827-6317
E-mail: [email protected]
Ron Wertz
National Institute of Nursing Research (NINR)
Telephone: 301-594-2807
Email: [email protected]
Erik Edgerton
NIAMS - NATIONAL INSTITUTE OF ARTHRITIS AND MUSCULOSKELETAL AND SKIN DISEASES
Phone: 301-594-7760
E-mail: [email protected]
Christopher Myers
NIDCD - NATIONAL INSTITUTE ON DEAFNESS AND OTHER COMMUNICATION DISORDERS
Phone: (301) 435-0713
E-mail: [email protected]
Jeni Smits
NATIONAL INSTITUTE ON AGING (NIA)
E-mail: [email protected]
Crystal Wolfrey
National Cancer Institute (NCI)
Phone: 240-276-6277
E-mail: [email protected]
Lucia Hindorff, Ph.D.
National Human Genome Research Institute (NHGRI)
Telephone: 240-271-1509
Email: [email protected]