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Research on the Transition from Pediatric to Adult Health Care
When beginning your next investigator-initiated application, consider the following NIH highlighted topic. The area of science described below is of interest to the listed NIH Institutes, Centers, and Offices (ICOs). This is not a notice of funding opportunity (NOFO).
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Topic Description
Post Date: September 11, 2025
Expiration Date: August 29, 2026
Background
With improved rates of survival for childhood-onset conditions, many children and youth are living longer with a wide range of chronic diseases and conditions, encompassing medical, developmental, behavioral, or emotional conditions, as well as the sequelae of treatments for these conditions. Collectively, these Children and Youth with Special Health Care Needs (CYSHCN) face increased health risks that often require complex, multidisciplinary care. As CYSHCN transition from pediatric to adult health care services, they face myriad challenges in accessing age-appropriate care, managing developmental needs, and supporting optimal health.
The adverse consequences of failure of transition from pediatric to adult health care systems are life-altering. However, a 2022 systematic review found no globally accepted definition for successful health care transition (HCT), and a dearth of evidence to guide HCT interventions.
Purpose
This topic encourages applications aimed at linking HCT practices to improved health and well-being outcomes for CYSHCN. Priority areas for this topic are guided by the 2020 NIH workshop: "Navigating Pediatric to Adult Health Care: Lost in Transition.”
Areas of highest priority for this topic are:
1) Methods and Measures
This priority includes development and validation of outcome measures applicable across conditions and developmental stages. Study designs should include a comparison group to provide stronger support for potential causal inference.
Examples include, but are not limited to:
- Projects validating measures anchored in meaningful health and well-being outcomes for HCT, not merely knowledge or clinical process outcomes.
- Projects that characterize areas of concordance and/or discrepancies among adolescent and caregiver reports relevant to HCT interventions.
- Projects utilizing innovative approaches, such as accelerated longitudinal designs, synthetic control arms, and in silico clinical trials, which may expedite assessment of longitudinal outcomes following HCT interventions.
2) Research and Practice
This priority includes the use of community-engaged research methods and the integration of perspectives of people with lived experiences (PWLE). Proposals that capture both commonalities and differences across a range of diseases and conditions, youth and family backgrounds, socioenvironmental contexts, clinical care settings, data types, and payment/reimbursement systems are of particular interest.
Examples include, but are not limited to:
- Projects that engage adolescents and youth across a wide range of cognitive and adaptive functioning to co-design interventions, outcome measures, and data collection strategies.
- Projects that directly engage clinical providers and staff to design and implement interventions that are feasible across a range of real-world clinical settings.
Participating ICOs
NICHD encourages applications on topics relevant to NICHD's priority populations, including children, adolescents, and persons with intellectual, developmental, and/or physical disabilities. NICHD is particularly interested in research that relates to the Institute’s scientific research priorities and strategic plan goals.
Please note that applications assigned to NICHD that address the mission and priorities of other Institutes that are not participating in this topic will not be prioritized for funding by NICHD. Furthermore, proposals in which outcome measures are limited to knowledge or process outcomes, without associated health outcomes, are of lower interest and unlikely to be prioritized for funding.
ICO Scientific Contact:Tracy King, MD, MPH
[email protected]
Samantha Calabrese, MPH
[email protected]
Specific research areas of interest to NHLBI include:
- Improving pediatric-to-adult transition care for heart, lung, blood and sleep (HLBS) conditions, such as sickle cell disease, hemophilia, von Willebrand’s disease, congenital and pediatric heart conditions, and asthma
- Exploring role of self-efficacy in therapy adherence during health care transitions
- Studying the implementation of evidence-based practices and sustainability in public health and clinical practice transition care
- Focusing on whole-person care and health transitions throughout life stages
- Lifestyle and other interventions (e.g., nutrition, physical activity, sedentary behavior, sleep, stress) at different life stages to prevent chronic diseases and promote health
Marrah Lachowicz-Scroggins
[email protected]
NIAAA is interested in supporting health care transition (HCT) research for adolescents and emerging adults with fetal alcohol spectrum disorders (FASD), a leading cause of intellectual disability and birth defects in the U.S. Individuals with FASD experience unique combinations of day-to-day challenges caused not only by the primary cognitive and behavioral disabilities associated with FASD, but also by secondary disabilities involving medical, mental health, educational, and community integration issues that emerge over time. Health system improvements, particularly as individuals transition from pediatric to adult healthcare services, are greatly needed to increase knowledge and understanding of FASD’s health effects across the lifespan, manage developmental needs of individuals with FASD, and better qualify for appropriate services and interventions.
ICO Scientific Contact:William Dunty, PhD
[email protected]
NIDA seeks research supporting adolescents and young adults in transitions in care, which include preventative, treatment and recovery services related to substance use, misuse, and addiction. NIDA encourages research supporting:
- Access to medications for opioid use disorder for adolescents and young adults as they move through critical developmental periods and transition across the pediatric and adult care systems
- Interventions to prevent the onset of substance use disorders among those who have initiated use
- Overdose prevention strategies
- Recovery support services tailored to youth and adolescent developmental stages
- Linkage interventions that support transitions from treatment contexts to community settings
- Studies focused on families and loved ones in planning and navigating these care transitions
The engagement of adolescents and youth with lived and living experience, family members/loved ones, clinicians and recovery support service providers is strongly encouraged.
ICO Scientific Contact:Sean Lynch, PhD, LCSW
[email protected]
The National Institute of Dental and Craniofacial Research (NIDCR) supports analytical, fundamental, and translational research to advance knowledge in dental, oral, and craniofacial (DOC) health. NIDCR is interested in supporting HCT research on topics that impact human behaviors during the transition from pediatric to adult care on DOC and oral-systemic health outcomes. Conditions include care delivery to those with birth defects, craniofacial abnormalities, dental caries, interprofessional care, oral hygiene promotion, oral speech pathologies and rehabilitation, pain management, periodontal diseases, social and behavioral genomics, Sjögren’s disease, and temporomandibular joint and muscle disorders. Additional conditions that can influence DOC health include arthritis, cancer, dementias, diabetes, inflammation, kidney disease, obesity, and dry mouth.
ICO Scientific Contact:William Elwood, PhD
[email protected]
NIDDK is interested in supporting healthcare transition research that aims to improve management of diseases within its mission across the transition from pediatric to adult care. Poorly anticipated and poorly managed transitions risk loss of disease control that may have life-altering consequences.
- Observational studies and clinical trials that address or ameliorate discontinuity in care with meaningful health and well-being outcomes will be prioritized.
- Applications in which outcome measures are limited to knowledge or process outcomes, without associated health outcomes, are of lower interest and unlikely to be prioritized for funding.
Susan Mendley, MD
[email protected]
Debbie Gipson, MD, MS
[email protected]
NIMH interest is focused on the prevention and treatment of mental health conditions in emerging adults (ages 18-25), in settings where individuals receive interventions or can feasibly be connected to mental health services.
Areas of particular interest include testing the effectiveness of:
- Research-informed mental health interventions that are adapted to address the unique developmental needs and social characteristics of emerging adults, including areas that promote academic and vocational functioning.
- Navigator models and other service delivery strategies to improve access, engagement, and continuity of care, including strategies previously used for chronic physical health conditions that can be adapted for mental health.
- Provider, systems, and financing strategies that facilitate transition planning and continuity of care for emerging adults on the autism spectrum or who have serious mental illness.
NIMH support for clinical trials is limited to NIMH-specific NOFOs.
ICO Scientific Contact:Mary Rooney, Ph.D, ABPP
[email protected]
The NINR supports rigorous research conducted by scientists from any discipline. NINR leads discoveries of innovative systems and models of care, breakthroughs in disease prevention and health promotion, and advances in population and community health.
NINR invites research project grant applications on the following topics to advance health and wellbeing outcomes among CYSHCN by improving healthcare transitions.
- Projects that develop, implement, and evaluate nurse-led models that explicitly incorporate consideration of the young adult's and/or family’s conditions of daily life.
- Transition interventions that take place in or include linkages to non-traditional clinical-care settings where nurses practice, particularly school-based health contexts.
- Projects that develop and validate meaningful transition-related health and wellbeing outcome measures that also incorporate assessment of educational and other critical domains of function that have health impacts.
Karen Huss, PhD, RN
[email protected]
This office does not award grants. Applications must be relevant to the objectives of at least one of the participating NIH Institutes and Centers listed in this topic.
For this topic, ODP is particularly interested in projects to develop, adapt, or test, or implement health care transition prevention interventions for Children and Youth with Special Health Care Needs (CYSHCN), including multi-site or cluster randomized clinical trials.
This office does not award grants. Applications must be relevant to the objectives of at least one of the participating NIH Institutes and Centers listed in this topic.
ICO Scientific Contact:Elizabeth L. Neilson, PhD, MPH, MSN
[email protected]
The areas of interest of the Office of Autoimmune Disease Research in the Office of Research on Women’s Health (OADR-ORWH) include:
- Accelerating scientific discovery in diagnosis, treatment, prevention and cures and enhancing health for people with autoimmune disease.
This office does not award grants. Applications must be relevant to the objectives of at least one of the participating NIH Institutes and Centers listed in this topic.
ICO Scientific Contact:Elena Gorodetsky, M.D., Ph.D.
[email protected]
Victoria Shanmugam, MBBS, MRCP, FACR, CCD
[email protected]
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