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-Imaz; Andrea 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

doi:10.1016/j.cct.2012.03.009

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

Obstetrics and Gynecology

Research output: Contribution to journal › Article › peer-review

29 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 language	English (US)
Pages (from-to)	633-640
Number of pages	8
Journal	Contemporary Clinical Trials
Volume	33
Issue number	4
DOIs	https://doi.org/10.1016/j.cct.2012.03.009
State	Published - Jul 2012

Keywords

Ethnic-minority
Prospective cohort
Recruitment
Retention
Type 1 diabetes

ASJC Scopus subject areas

Pharmacology (medical)

Access to Document

10.1016/j.cct.2012.03.009

Cite this

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

Baxter, J, Vehik, K, Johnson, SB, 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, Samper-Imaz, A, Steck, A, She, J-X, Schatz, D, Hopkins, D, Steed, L, Thomas, J, Silvis, K, Haller, M, Shankar, M, English, K, McIndoe, RA, Liu, H, Nechtman, J, Williams, J, Foghis, G, Stephen, W, Anderson, MD, Ziegler, AG, Achenbach, A, Boerschmann, H, Bonifacio, E, Bunk, M, Försch, J, Henneberger, L, Hummel, M, Hummel, S, Joslowski, G, Kersting, M, Knopff, A, Kocher, N, Koletzko, S, Krause, S, Mann, A, Matzke, C, Mittermeier, A, Peplow, C, Pflüger, M, Ramminger, C, Strauss, E, Rash-Sur, S, Roth, R, Schenkel, J, Stock, J, Voit, K, Winkler, C, Wosch, A, Zwilling, M, Simell, OG, Nanto-Salonen, K, Ilonen, J, Knip, M, Tuula Simell, V, Hyöty, H, Virtanen, SM, Kronberg-Kippilä, C, Sjöberg, M, Simell, B, Ruohonen, E, Romo, M, Mantymaki, E, Schroderus, H, Nyblom, M, Stenius, A, Lernmark, Å, Agardh, D, Almgren, P, Andersson, E, Andrén-Aronsson, C, Ask, M, Karlsson, UM, Cilio, C, Bremer, J, Ericson-Hallström, E, Gard, T, Gerardsson, J, Hansson, G, Hansen, M, Hyberg, S, Håkansson, R, Johansen, F, Jonsson, L, Larsson, H, Lernmark, B, Markan, M, Massadakis, T, Melin, J, Månsson-Martinez, M, Nilsson, A, Rahmati, K, Järvirova, MS, Sibthorpe, S, Sjöberg, B, Skogberg, A, Törn, C, Wallin, A, Wimar, Å, Åberg, S, Hagopian, WA, Yan, X, Killian, M, Cowen Crouch, C, Hay, KM, Ayres, S, Adams, C, Bratrude, B, Coughlin, D, Fowler, G, Franco, C, Hammar, C, Heaney, D, Marcus, P, Meyer, A, Mulenga, D, Scott, E, Skidmore, J, Stabbert, J, Stepitova, V, Williams, N, Becker, D, Franciscus, M, Dalmagro-Elias, ME, Daftary, A, Krischer, JP, Abbondondolo, M, Ballard, L, Brown, R, Burkhardt, B, Cuthbertson, D, Eberhard, C, Fiske, S, Gowda, V, Hadley, D, Lee, HS, Liu, S, Lynch, K, Malloy, J, McCarthy, C, McLeod, W, Smith, L, Smith, S, Uusitalo, U, Vehik, K, Washington, E, Yang, J, Akolkar, B, Briese, T, Erlich, H, Johnson, SB & Oberste, S 2012, 'Differences in recruitment and early retention among ethnic minority participants in a large pediatric cohort: The TEDDY Study', Contemporary Clinical Trials, vol. 33, no. 4, pp. 633-640. https://doi.org/10.1016/j.cct.2012.03.009

@article{d0483546eabf438b8a309ca7552ac53b,

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

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.",

keywords = "Ethnic-minority, Prospective cohort, Recruitment, Retention, Type 1 diabetes",

author = "Judith Baxter and Kendra Vehik and Johnson, {Suzanne Bennett} and Barbro Lernmark and Roswith Roth and Tuula Simell and Marian Rewers and Katherine Barriga and Kimberly Bautista and Judith Baxter and George Eisenbarth and Nicole Frank and Patricia Gesualdo and Michelle Hoffman and Lisa Ide and Rachel Karban and Edwin Liu and Jill Norris and Kathleen Waugh and Adela Samper-Imaz and Andrea Steck and Jin-Xiong She and Desmond Schatz and Diane Hopkins and Leigh Steed and Jamie Thomas and Katherine Silvis and Michael Haller and Meena Shankar and Kim English and McIndoe, {Richard A} and Haitao Liu and John Nechtman and Joshua Williams and Gabriela Foghis and W. Stephen and Anderson, {M. D.} and Ziegler, {Anette G.} and Alexandra Achenbach and Heike Boerschmann and Ezio Bonifacio and Melanie Bunk and Johannes F{\"o}rsch and Lydia Henneberger and Michael Hummel and Sandra Hummel and Gesa Joslowski and Mathilde Kersting and Annette Knopff and Nadja Kocher and Sibylle Koletzko and Stephanie Krause and Angelika Mann and Claudia Matzke and Astrid Mittermeier and Claudia Peplow and Maren Pfl{\"u}ger and Claudia Ramminger and Elisabeth Strauss and Sargol Rash-Sur and Roswith Roth and Julia Schenkel and Joanna Stock and Katja Voit and Christiane Winkler and Anja Wosch and Marina Zwilling and Simell, {Olli G.} and Kirsti Nanto-Salonen and Jorma Ilonen and Mikael Knip and {Tuula Simell}, Veijola and Heikki Hy{\"o}ty and Virtanen, {Suvi M.} and Carina Kronberg-Kippil{\"a} and Maija Sj{\"o}berg and Barbara Simell and Eeva Ruohonen and Minna Romo and Elina Mantymaki and Heidi Schroderus and Mia Nyblom and Aino Stenius and {\AA}ke Lernmark and Daniel Agardh and Peter Almgren and Eva Andersson and Carin Andr{\'e}n-Aronsson and Maria Ask and Karlsson, {Ulla Marie} and Corrado Cilio and Jenny Bremer and Emilie Ericson-Hallstr{\"o}m and Thomas Gard and Joanna Gerardsson and Gertie Hansson and Monica Hansen and Susanne Hyberg and Rasmus H{\aa}kansson and Fredrik Johansen and Linda Jonsson and Helena Larsson and Barbro Lernmark and Maria Markan and Theodosia Massadakis and Jessica Melin and Maria M{\aa}nsson-Martinez and Anita Nilsson and Kobra Rahmati and J{\"a}rvirova, {Monica Sedig} and Sara Sibthorpe and Birgitta Sj{\"o}berg and Anna Skogberg and Carina T{\"o}rn and Anne Wallin and {\AA}sa Wimar and Sofie {\AA}berg and Hagopian, {William A.} and Xiang Yan and Michael Killian and {Cowen Crouch}, Claire and Hay, {Kristen M.} and Stephen Ayres and Carissa Adams and Brandi Bratrude and David Coughlin and Greer Fowler and Czarina Franco and Carla Hammar and Diana Heaney and Patrick Marcus and Arlene Meyer and Denise Mulenga and Elizabeth Scott and Jennifer Skidmore and Joshua Stabbert and Viktoria Stepitova and Nancy Williams and Dorothy Becker and Margaret Franciscus and Dalmagro-Elias, {Mary Ellen} and Ashi Daftary and Krischer, {Jeffrey P.} and Michael Abbondondolo and Lori Ballard and Rasheedah Brown and Brant Burkhardt and David Cuthbertson and Christopher Eberhard and Steven Fiske and Veena Gowda and David Hadley and Lee, {Hye Seung} and Shu Liu and Kristian Lynch and Jamie Malloy and Cristina McCarthy and Wendy McLeod and Laura Smith and Susan Smith and Ulla Uusitalo and Kendra Vehik and Earnest Washington and Jimin Yang and Beena Akolkar and Thomas Briese and Henry Erlich and Johnson, {Suzanne Bennett} and Steve Oberste",

year = "2012",

month = jul,

doi = "10.1016/j.cct.2012.03.009",

language = "English (US)",

volume = "33",

pages = "633--640",

journal = "Contemporary Clinical Trials",

issn = "1551-7144",

publisher = "Elsevier Inc.",

number = "4",

}

TY - JOUR

T1 - Differences in recruitment and early retention among ethnic minority participants in a large pediatric cohort

T2 - The TEDDY Study

AU - Baxter, Judith

AU - Vehik, Kendra

AU - Johnson, Suzanne Bennett

AU - Lernmark, Barbro

AU - Roth, Roswith

AU - Simell, Tuula

AU - Rewers, Marian

AU - Barriga, Katherine

AU - Bautista, Kimberly

AU - Baxter, Judith

AU - Eisenbarth, George

AU - Frank, Nicole

AU - Gesualdo, Patricia

AU - Hoffman, Michelle

AU - Ide, Lisa

AU - Karban, Rachel

AU - Liu, Edwin

AU - Norris, Jill

AU - Waugh, Kathleen

AU - Samper-Imaz, Adela

AU - Steck, Andrea

AU - She, Jin-Xiong

AU - Schatz, Desmond

AU - Hopkins, Diane

AU - Steed, Leigh

AU - Thomas, Jamie

AU - Silvis, Katherine

AU - Haller, Michael

AU - Shankar, Meena

AU - English, Kim

AU - McIndoe, Richard A

AU - Liu, Haitao

AU - Nechtman, John

AU - Williams, Joshua

AU - Foghis, Gabriela

AU - Stephen, W.

AU - Anderson, M. D.

AU - Ziegler, Anette G.

AU - Achenbach, Alexandra

AU - Boerschmann, Heike

AU - Bonifacio, Ezio

AU - Bunk, Melanie

AU - Försch, Johannes

AU - Henneberger, Lydia

AU - Hummel, Michael

AU - Hummel, Sandra

AU - Joslowski, Gesa

AU - Kersting, Mathilde

AU - Knopff, Annette

AU - Kocher, Nadja

AU - Koletzko, Sibylle

AU - Krause, Stephanie

AU - Mann, Angelika

AU - Matzke, Claudia

AU - Mittermeier, Astrid

AU - Peplow, Claudia

AU - Pflüger, Maren

AU - Ramminger, Claudia

AU - Strauss, Elisabeth

AU - Rash-Sur, Sargol

AU - Roth, Roswith

AU - Schenkel, Julia

AU - Stock, Joanna

AU - Voit, Katja

AU - Winkler, Christiane

AU - Wosch, Anja

AU - Zwilling, Marina

AU - Simell, Olli G.

AU - Nanto-Salonen, Kirsti

AU - Ilonen, Jorma

AU - Knip, Mikael

AU - Tuula Simell, Veijola

AU - Hyöty, Heikki

AU - Virtanen, Suvi M.

AU - Kronberg-Kippilä, Carina

AU - Sjöberg, Maija

AU - Simell, Barbara

AU - Ruohonen, Eeva

AU - Romo, Minna

AU - Mantymaki, Elina

AU - Schroderus, Heidi

AU - Nyblom, Mia

AU - Stenius, Aino

AU - Lernmark, Åke

AU - Agardh, Daniel

AU - Almgren, Peter

AU - Andersson, Eva

AU - Andrén-Aronsson, Carin

AU - Ask, Maria

AU - Karlsson, Ulla Marie

AU - Cilio, Corrado

AU - Bremer, Jenny

AU - Ericson-Hallström, Emilie

AU - Gard, Thomas

AU - Gerardsson, Joanna

AU - Hansson, Gertie

AU - Hansen, Monica

AU - Hyberg, Susanne

AU - Håkansson, Rasmus

AU - Johansen, Fredrik

AU - Jonsson, Linda

AU - Larsson, Helena

AU - Lernmark, Barbro

AU - Markan, Maria

AU - Massadakis, Theodosia

AU - Melin, Jessica

AU - Månsson-Martinez, Maria

AU - Nilsson, Anita

AU - Rahmati, Kobra

AU - Järvirova, Monica Sedig

AU - Sibthorpe, Sara

AU - Sjöberg, Birgitta

AU - Skogberg, Anna

AU - Törn, Carina

AU - Wallin, Anne

AU - Wimar, Åsa

AU - Åberg, Sofie

AU - Hagopian, William A.

AU - Yan, Xiang

AU - Killian, Michael

AU - Cowen Crouch, Claire

AU - Hay, Kristen M.

AU - Ayres, Stephen

AU - Adams, Carissa

AU - Bratrude, Brandi

AU - Coughlin, David

AU - Fowler, Greer

AU - Franco, Czarina

AU - Hammar, Carla

AU - Heaney, Diana

AU - Marcus, Patrick

AU - Meyer, Arlene

AU - Mulenga, Denise

AU - Scott, Elizabeth

AU - Skidmore, Jennifer

AU - Stabbert, Joshua

AU - Stepitova, Viktoria

AU - Williams, Nancy

AU - Becker, Dorothy

AU - Franciscus, Margaret

AU - Dalmagro-Elias, Mary Ellen

AU - Daftary, Ashi

AU - Krischer, Jeffrey P.

AU - Abbondondolo, Michael

AU - Ballard, Lori

AU - Brown, Rasheedah

AU - Burkhardt, Brant

AU - Cuthbertson, David

AU - Eberhard, Christopher

AU - Fiske, Steven

AU - Gowda, Veena

AU - Hadley, David

AU - Lee, Hye Seung

AU - Liu, Shu

AU - Lynch, Kristian

AU - Malloy, Jamie

AU - McCarthy, Cristina

AU - McLeod, Wendy

AU - Smith, Laura

AU - Smith, Susan

AU - Uusitalo, Ulla

AU - Vehik, Kendra

AU - Washington, Earnest

AU - Yang, Jimin

AU - Akolkar, Beena

AU - Briese, Thomas

AU - Erlich, Henry

AU - Johnson, Suzanne Bennett

AU - Oberste, Steve

PY - 2012/7

Y1 - 2012/7

N2 - 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.

AB - 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.

KW - Ethnic-minority

KW - Prospective cohort

KW - Recruitment

KW - Retention

KW - Type 1 diabetes

UR - http://www.scopus.com/inward/record.url?scp=84861527847&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84861527847&partnerID=8YFLogxK

U2 - 10.1016/j.cct.2012.03.009

DO - 10.1016/j.cct.2012.03.009

M3 - Article

C2 - 22484339

AN - SCOPUS:84861527847

VL - 33

SP - 633

EP - 640

JO - Contemporary Clinical Trials

JF - Contemporary Clinical Trials

SN - 1551-7144

IS - 4

ER -

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

Abstract

Keywords

ASJC Scopus subject areas

Access to Document

Other files and links

Fingerprint

Cite this