Differences in recruitment and early retention among ethnic minority participants in a large pediatric cohort: The TEDDY Study

Judith Baxter, Kendra Vehik, Suzanne Bennett Johnson, Barbro Lernmark, Roswith Roth, Tuula Simell, Marian Rewers, Katherine Barriga, Kimberly Bautista, Judith Baxter, George Eisenbarth, Nicole Frank, Patricia Gesualdo, Michelle Hoffman, Lisa Ide, Rachel Karban, Edwin Liu, Jill Norris, Kathleen Waugh, Adela Samper-ImazAndrea Steck, Jin-Xiong She, Desmond Schatz, Diane Hopkins, Leigh Steed, Jamie Thomas, Katherine Silvis, Michael Haller, Meena Shankar, Kim English, Richard A McIndoe, Haitao Liu, John Nechtman, Joshua Williams, Gabriela Foghis, W. Stephen, M. D. Anderson, Anette G. Ziegler, Alexandra Achenbach, Heike Boerschmann, Ezio Bonifacio, Melanie Bunk, Johannes Försch, Lydia Henneberger, Michael Hummel, Sandra Hummel, Gesa Joslowski, Mathilde Kersting, Annette Knopff, Nadja Kocher, Sibylle Koletzko, Stephanie Krause, Angelika Mann, Claudia Matzke, Astrid Mittermeier, Claudia Peplow, Maren Pflüger, Claudia Ramminger, Elisabeth Strauss, Sargol Rash-Sur, Roswith Roth, Julia Schenkel, Joanna Stock, Katja Voit, Christiane Winkler, Anja Wosch, Marina Zwilling, Olli G. Simell, Kirsti Nanto-Salonen, Jorma Ilonen, Mikael Knip, Veijola Tuula Simell, Heikki Hyöty, Suvi M. Virtanen, Carina Kronberg-Kippilä, Maija Sjöberg, Barbara Simell, Eeva Ruohonen, Minna Romo, Elina Mantymaki, Heidi Schroderus, Mia Nyblom, Aino Stenius, Åke Lernmark, Daniel Agardh, Peter Almgren, Eva Andersson, Carin Andrén-Aronsson, Maria Ask, Ulla Marie Karlsson, Corrado Cilio, Jenny Bremer, Emilie Ericson-Hallström, Thomas Gard, Joanna Gerardsson, Gertie Hansson, Monica Hansen, Susanne Hyberg, Rasmus Håkansson, Fredrik Johansen, Linda Jonsson, Helena Larsson, Barbro Lernmark, Maria Markan, Theodosia Massadakis, Jessica Melin, Maria Månsson-Martinez, Anita Nilsson, Kobra Rahmati, Monica Sedig Järvirova, Sara Sibthorpe, Birgitta Sjöberg, Anna Skogberg, Carina Törn, Anne Wallin, Åsa Wimar, Sofie Åberg, William A. Hagopian, Xiang Yan, Michael Killian, Claire Cowen Crouch, Kristen M. Hay, Stephen Ayres, Carissa Adams, Brandi Bratrude, David Coughlin, Greer Fowler, Czarina Franco, Carla Hammar, Diana Heaney, Patrick Marcus, Arlene Meyer, Denise Mulenga, Elizabeth Scott, Jennifer Skidmore, Joshua Stabbert, Viktoria Stepitova, Nancy Williams, Dorothy Becker, Margaret Franciscus, Mary Ellen Dalmagro-Elias, Ashi Daftary, Jeffrey P. Krischer, Michael Abbondondolo, Lori Ballard, Rasheedah Brown, Brant Burkhardt, David Cuthbertson, Christopher Eberhard, Steven Fiske, Veena Gowda, David Hadley, Hye Seung Lee, Shu Liu, Kristian Lynch, Jamie Malloy, Cristina McCarthy, Wendy McLeod, Laura Smith, Susan Smith, Ulla Uusitalo, Kendra Vehik, Earnest Washington, Jimin Yang, Beena Akolkar, Thomas Briese, Henry Erlich, Suzanne Bennett Johnson, Steve Oberste

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25 Scopus citations

Abstract

Objective: The TEDDY Study is an international, multi-center prospective study designed to identify the environmental triggers of type 1 diabetes (T1D) in genetically at-risk children. This report investigates ethnic minority (EM) differences in patterns of enrollment and retention in the US centers. Methods: As of June 2009, 267,739 newborns had been screened at birth for high risk T1D genotypes. Data collected at the time of screening, enrollment and at the baseline visit were used. Descriptive and multiple-logistic regression analyses assessed differences between EM groups regarding exclusion, enrollment and early withdrawal. Results: Of the 10,975 eligible subjects, 6,912 (67%) were invited to participate. EM subjects were more likely to be excluded because of an inability to contact. Of those invited 3,265 (47%) enrolled by the age of 4.5. months. Adjusted analyses showed that except for those classified as other EM, the odds of enrolling were similar across groups. EM subjects had elevated early withdrawal rates. Adjusted models demonstrated that this was significantly more likely among Hispanic subjects. Conclusion: Understanding patterns associated with EM participation in research extends our ability to make more accurate inferences and permits assessment of strategies that promote inclusion of EM to better address health disparities.

Original languageEnglish (US)
Pages (from-to)633-640
Number of pages8
JournalContemporary Clinical Trials
Volume33
Issue number4
DOIs
StatePublished - Jul 1 2012

Keywords

  • Ethnic-minority
  • Prospective cohort
  • Recruitment
  • Retention
  • Type 1 diabetes

ASJC Scopus subject areas

  • Pharmacology (medical)

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    Baxter, J., Vehik, K., Johnson, S. B., Lernmark, B., Roth, R., Simell, T., Rewers, M., Barriga, K., Bautista, K., Baxter, J., Eisenbarth, G., Frank, N., Gesualdo, P., Hoffman, M., Ide, L., Karban, R., Liu, E., Norris, J., Waugh, K., ... Oberste, S. (2012). Differences in recruitment and early retention among ethnic minority participants in a large pediatric cohort: The TEDDY Study. Contemporary Clinical Trials, 33(4), 633-640. https://doi.org/10.1016/j.cct.2012.03.009