Structures and strategies for retaining an international pediatric cohort from birth: Lessons from The Environmental Determinants of Diabetes in the Young (TEDDY) study
Background: Retention of study participants in observational studies is essential to maintaining the representativeness of the population, minimizing selection bias, and assuring sufficient statistical power. The aim of this report is to describe the structures and strategies used to retain particip...
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Elsevier
2025-04-01
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| Series: | Contemporary Clinical Trials Communications |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2451865424001522 |
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| author | Patricia Gesualdo Jessica Melin Rachel Karban Claire Crouch Michael Killian Diane Hopkins Annika Adamsson Joanna Stock Suzanne Bennett Johnson Judith Baxter |
| author_facet | Patricia Gesualdo Jessica Melin Rachel Karban Claire Crouch Michael Killian Diane Hopkins Annika Adamsson Joanna Stock Suzanne Bennett Johnson Judith Baxter |
| author_sort | Patricia Gesualdo |
| collection | DOAJ |
| description | Background: Retention of study participants in observational studies is essential to maintaining the representativeness of the population, minimizing selection bias, and assuring sufficient statistical power. The aim of this report is to describe the structures and strategies used to retain participants in The Environmental Determinants of Diabetes in the Young (TEDDY) Study, an observational study of children at increased genetic risk for type 1 diabetes followed in an intensive protocol from birth until age 15. Methods: Teague et al.’s systematic review of study retention strategies identified four domains: barrier reduction; community building; follow-up/reminder; and tracing strategies (1). TEDDY retention strategies were categorized into each of these domains. A fifth category presented strategies unique to TEDDY. Results: TEDDY employed over one hundred retention strategies during the 15 years of follow-up; many could be categorized within the Teague domains. Strategies unique to TEDDY included (1) study structures to support retention; (2) risk communication and education strategies specific to this population; (3) Data-informed retention strategies that addressed protocol challenges in real-time; and (4) implementation of a re-engagement protocol for those who had withdrawn from the study. Conclusion: Pediatric cohort studies should include strategies, structures, and resources to address retention at the study's initiation and on an ongoing basis. Retention strategies should not remain static but change with the developmental needs of the child. Collecting and analyzing data on an ongoing basis permits retention strategies to be put in place to address protocol and retention challenges in real time. Trial registration: ClinicalTrials.gov Identifier: NCT00279318. |
| format | Article |
| id | doaj-art-1dfb3f89ec69455cb3e89848993e743f |
| institution | Kabale University |
| issn | 2451-8654 |
| language | English |
| publishDate | 2025-04-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Contemporary Clinical Trials Communications |
| spelling | doaj-art-1dfb3f89ec69455cb3e89848993e743f2025-02-12T05:31:28ZengElsevierContemporary Clinical Trials Communications2451-86542025-04-0144101405Structures and strategies for retaining an international pediatric cohort from birth: Lessons from The Environmental Determinants of Diabetes in the Young (TEDDY) studyPatricia Gesualdo0Jessica Melin1Rachel Karban2Claire Crouch3Michael Killian4Diane Hopkins5Annika Adamsson6Joanna Stock7Suzanne Bennett Johnson8Judith Baxter9Barbara Davis Center for Diabetes, University of Colorado, Aurora, CO, USA; Corresponding author.Department of Clinical Sciences Malmö, Lund University, SwedenBarbara Davis Center for Diabetes, University of Colorado, Aurora, CO, USAPacific Northwest Research Institute, Seattle, WA, USAPacific Northwest Research Institute, Seattle, WA, USACenter for Biotechnology and Genomic Medicine, Medical College of Georgia, Georgia Regents University, Augusta, GA, USAInstitute of Biomedicine, Research Centre for Integrative Physiology and Pharmacology, and Centre for Population Health Research, University of Turku, And Department of Pediatrics, Turku University Hospital, Turku, FinlandInstitute of Diabetes Research, Helmholtz Zentrum München, And Klinikum Rechts der Isar, Technische Universität München, And Forschergruppe Diabetes e.V., Neuherberg, GermanyDepartment of Behavioral Sciences and Social Medicine, Florida State University College of Medicine, Tallahassee, FL, USABarbara Davis Center for Diabetes, University of Colorado, Aurora, CO, USABackground: Retention of study participants in observational studies is essential to maintaining the representativeness of the population, minimizing selection bias, and assuring sufficient statistical power. The aim of this report is to describe the structures and strategies used to retain participants in The Environmental Determinants of Diabetes in the Young (TEDDY) Study, an observational study of children at increased genetic risk for type 1 diabetes followed in an intensive protocol from birth until age 15. Methods: Teague et al.’s systematic review of study retention strategies identified four domains: barrier reduction; community building; follow-up/reminder; and tracing strategies (1). TEDDY retention strategies were categorized into each of these domains. A fifth category presented strategies unique to TEDDY. Results: TEDDY employed over one hundred retention strategies during the 15 years of follow-up; many could be categorized within the Teague domains. Strategies unique to TEDDY included (1) study structures to support retention; (2) risk communication and education strategies specific to this population; (3) Data-informed retention strategies that addressed protocol challenges in real-time; and (4) implementation of a re-engagement protocol for those who had withdrawn from the study. Conclusion: Pediatric cohort studies should include strategies, structures, and resources to address retention at the study's initiation and on an ongoing basis. Retention strategies should not remain static but change with the developmental needs of the child. Collecting and analyzing data on an ongoing basis permits retention strategies to be put in place to address protocol and retention challenges in real time. Trial registration: ClinicalTrials.gov Identifier: NCT00279318.http://www.sciencedirect.com/science/article/pii/S2451865424001522RetentionLongitudinal studyType 1 diabetesPediatricStrategies |
| spellingShingle | Patricia Gesualdo Jessica Melin Rachel Karban Claire Crouch Michael Killian Diane Hopkins Annika Adamsson Joanna Stock Suzanne Bennett Johnson Judith Baxter Structures and strategies for retaining an international pediatric cohort from birth: Lessons from The Environmental Determinants of Diabetes in the Young (TEDDY) study Contemporary Clinical Trials Communications Retention Longitudinal study Type 1 diabetes Pediatric Strategies |
| title | Structures and strategies for retaining an international pediatric cohort from birth: Lessons from The Environmental Determinants of Diabetes in the Young (TEDDY) study |
| title_full | Structures and strategies for retaining an international pediatric cohort from birth: Lessons from The Environmental Determinants of Diabetes in the Young (TEDDY) study |
| title_fullStr | Structures and strategies for retaining an international pediatric cohort from birth: Lessons from The Environmental Determinants of Diabetes in the Young (TEDDY) study |
| title_full_unstemmed | Structures and strategies for retaining an international pediatric cohort from birth: Lessons from The Environmental Determinants of Diabetes in the Young (TEDDY) study |
| title_short | Structures and strategies for retaining an international pediatric cohort from birth: Lessons from The Environmental Determinants of Diabetes in the Young (TEDDY) study |
| title_sort | structures and strategies for retaining an international pediatric cohort from birth lessons from the environmental determinants of diabetes in the young teddy study |
| topic | Retention Longitudinal study Type 1 diabetes Pediatric Strategies |
| url | http://www.sciencedirect.com/science/article/pii/S2451865424001522 |
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