Reengaging Rural Research Participants After Two Decades: The NC Life Study’s Recruitment Challenges in an Era of Funding Uncertainty

The North Carolina Life (NC Life, R01DA056264, MPI: O’Shea and Taggart) study is a 20-year follow-up to a groundbreaking adolescent study (R01DA013459, PI: Ennett), which examined the health behaviors of over 8,000 racially diverse adolescents in rural North Carolina communities during the early 2000s. This extension study aimed to leverage the initial R01 NIH investment by investigating health trajectories from adolescence through emerging adulthood, with a particular focus on how exposure to neighborhood-, health system-, social network-, and school-level structural racism influences these pathways. In April 2025, with one year of funding remaining, NC Life’s NIH support was terminated because it “no longer effectuates agency priorities.” This termination occurred after a considerable amount of time, effort, and funding had been invested into the complex process of re-contacting and enrolling thousands of rural participants, many of whom had relocated, changed contact information, or had no memory of their original study participation some twenty years prior. This paper presents an analysis of our recruitment methodology and outcomes including a variety of dynamic active and passive recruitment strategies to reengage research-hesitant rural communities. We conclude by detailing the cost of what has been lost by funding termination, reinstatement, and overall uncertainty. Our findings offer critical insights for the growing number of studies that may face similar reengagement challenges following termination or other extended study interruptions. The premature termination of NC Life represents a lost opportunity to advance understanding of how structural racism shapes health outcomes across the life course in understudied rural populations.PUBLIC HEALTH SIGNIFICANCEThis work illustrates the substantial losses incurred by federal funding uncertainty, including the disruption of community trust in the research process and institutions and the development of novel databases which facilitate our understanding of structural drivers of health in understudied communities.

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UNC Libraries
Published
2026-10-30
DOI
https://doi.org/10.17615/k5m1-6e34
Primary Topic
Ethics in Clinical Research
Type
article
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article

Reengaging Rural Research Participants After Two Decades: The NC Life Study’s Recruitment Challenges in an Era of Funding Uncertainty

Emily Forrest Hutchens, Liann Tucker, Robert Faris, Marina Pearsall et al.
UNC Libraries
Ethics in Clinical Research
article

Reengaging Rural Research Participants After Two Decades: The NC Life Study’s Recruitment Challenges in an Era of Funding Uncertainty

Emily Forrest Hutchens, Liann Tucker, Robert Faris, Marina Pearsall, Nisha Gottfredson O’Shea, Tamara Taggart, Alberto Valido Delgado
article en

Abstract

The North Carolina Life (NC Life, R01DA056264, MPI: O’Shea and Taggart) study is a 20-year follow-up to a groundbreaking adolescent study (R01DA013459, PI: Ennett), which examined the health behaviors of over 8,000 racially diverse adolescents in rural North Carolina communities during the early 2000s. This extension study aimed to leverage the initial R01 NIH investment by investigating health trajectories from adolescence through emerging adulthood, with a particular focus on how exposure to neighborhood-, health system-, social network-, and school-level structural racism influences these pathways. In April 2025, with one year of funding remaining, NC Life’s NIH support was terminated because it “no longer effectuates agency priorities.” This termination occurred after a considerable amount of time, effort, and funding had been invested into the complex process of re-contacting and enrolling thousands of rural participants, many of whom had relocated, changed contact information, or had no memory of their original study participation some twenty years prior. This paper presents an analysis of our recruitment methodology and outcomes including a variety of dynamic active and passive recruitment strategies to reengage research-hesitant rural communities. We conclude by detailing the cost of what has been lost by funding termination, reinstatement, and overall uncertainty. Our findings offer critical insights for the growing number of studies that may face similar reengagement challenges following termination or other extended study interruptions. The premature termination of NC Life represents a lost opportunity to advance understanding of how structural racism shapes health outcomes across the life course in understudied rural populations.PUBLIC HEALTH SIGNIFICANCEThis work illustrates the substantial losses incurred by federal funding uncertainty, including the disruption of community trust in the research process and institutions and the development of novel databases which facilitate our understanding of structural drivers of health in understudied communities.

UNC Libraries
University of North Carolina at Chapel Hill (US)
Howard Hughes Medical Institute, U.S. Department of Energy, Alfred P. Sloan Foundation, March of Dimes Foundation, Welch Foundation, Gordon and Betty Moore Foundation, American Heart Association, Camille and Henry Dreyfus Foundation, William K. Warren Foundation, Pharmaceutical Research and Manufacturers of America Foundation, Alexander von Humboldt-Stiftung, Texas A and M University, Cancer Research Society, Lotte and John Hecht Memorial Foundation, Robertson Foundation, UK Research and Innovation, Gaussian, Ministerio de Ciencia, Innovación y Universidades, Heinz Family Foundation, Georgia Tech Foundation, Canadian Lung Association, National Institute for Health and Care Research, British Heart Foundation, Royal Society, European Commission, Commonwealth Scholarship Commission, Deutsche Forschungsgemeinschaft, Ministry of Education, Culture, Sports, Science and Technology, Schweizerischer Nationalfonds zur Förderung der Wissenschaftlichen Forschung, National Natural Science Foundation of China, Bundesministerium für Bildung und Forschung, Chinese Academy of Sciences, China Postdoctoral Science Foundation, Fonds Wetenschappelijk Onderzoek, Nederlandse Organisatie voor Wetenschappelijk Onderzoek, Cambridge Trust, Generalitat Valenciana, Ministero dell’Istruzione, dell’Università e della Ricerca, Karolinska Institutet, Max-Planck-Gesellschaft, Helse Vest, Terry Fox Research Institute, Riksbankens Jubileumsfond, Fondazione Umberto Veronesi, Otsuka Pharmaceutical, Svenska Läkaresällskapet, Yunnan Provincial Department of Education, Xunta de Galicia, Shanghai Key Laboratory of Peripheral Nerve and Microsurgery, Maurice Wilkins Centre for Molecular Biodiscovery, Lung Health Foundation, European Academy of Dermatology and Venereology, Ministero dell'Università e della Ricerca, National Institutes of Health, Directorate for Biological Sciences, National Institute of Food and Agriculture, American Chemical Society Petroleum Research Fund, Horizon 2020 Framework Programme, Leonard M. Miller School of Medicine, University of Miami, Cornell Atkinson Center for Sustainability, Cornell University, Kavli Institute at Cornell, Cornell University, Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Engineering and Physical Sciences Research Council, Health Research Council of New Zealand, Japan Science and Technology Agency, Instituto de Salud Carlos III, Estonian Research Competency Council, Chinese Universities Scientific Fund, European Regional Development Fund, Faculty of Medicine, Chiang Mai University, Agencia Estatal de Investigación, National Key Research and Development Program of China, Fundamental Research Funds for the Central Universities, Research England, National Research, Development and Innovation Office, NIHR Nottingham Biomedical Research Centre, National Institute on Aging, National Heart, Lung, and Blood Institute, National Institute of General Medical Sciences, National Institute of Diabetes and Digestive and Kidney Diseases, National Institute of Neurological Disorders and Stroke, Division of Chemistry, Division of Integrative Organismal Systems, Basic Energy Sciences, National Institute on Minority Health and Health Disparities, Stanford Maternal and Child Health Research Institute, Core Research for Evolutional Science and Technology, Air Force Office of Scientific Research, Army Research Office, H2020 Marie Skłodowska-Curie Actions, Energy Frontier Research Centers, HORIZON EUROPE Marie Sklodowska-Curie Actions, HORIZON EUROPE Health, HORIZON EUROPE European Research Council
Good health and well-being, Reduced inequalities
Openalex Percentile: Top 10%
Ethics in Clinical Research
DOIOpen Access PDFOpenAlex
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