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 | |
| State | Published - Jul 2012 |
Keywords
- Ethnic-minority
- Prospective cohort
- Recruitment
- Retention
- Type 1 diabetes
ASJC Scopus subject areas
- Pharmacology (medical)
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Differences in recruitment and early retention among ethnic minority participants in a large pediatric cohort : The TEDDY Study. / Baxter, Judith; Vehik, Kendra; Johnson, Suzanne Bennett; Lernmark, Barbro; Roth, Roswith; Simell, Tuula; Rewers, Marian; Barriga, Katherine; Bautista, Kimberly; Baxter, Judith; Eisenbarth, George; Frank, Nicole; Gesualdo, Patricia; Hoffman, Michelle; Ide, Lisa; Karban, Rachel; Liu, Edwin; Norris, Jill; Waugh, Kathleen; Samper-Imaz, Adela; Steck, Andrea; She, Jin-Xiong; Schatz, Desmond; Hopkins, Diane; Steed, Leigh; Thomas, Jamie; Silvis, Katherine; Haller, Michael; Shankar, Meena; English, Kim; McIndoe, Richard A; Liu, Haitao; Nechtman, John; Williams, Joshua; Foghis, Gabriela; Stephen, W.; Anderson, M. D.; Ziegler, Anette G.; Achenbach, Alexandra; Boerschmann, Heike; Bonifacio, Ezio; Bunk, Melanie; Försch, Johannes; Henneberger, Lydia; Hummel, Michael; Hummel, Sandra; Joslowski, Gesa; Kersting, Mathilde; Knopff, Annette; Kocher, Nadja; Koletzko, Sibylle; Krause, Stephanie; Mann, Angelika; Matzke, Claudia; Mittermeier, Astrid; Peplow, Claudia; Pflüger, Maren; Ramminger, Claudia; Strauss, Elisabeth; Rash-Sur, Sargol; Roth, Roswith; Schenkel, Julia; Stock, Joanna; Voit, Katja; Winkler, Christiane; Wosch, Anja; Zwilling, Marina; Simell, Olli G.; Nanto-Salonen, Kirsti; Ilonen, Jorma; Knip, Mikael; Tuula Simell, Veijola; Hyöty, Heikki; Virtanen, Suvi M.; Kronberg-Kippilä, Carina; Sjöberg, Maija; Simell, Barbara; Ruohonen, Eeva; Romo, Minna; Mantymaki, Elina; Schroderus, Heidi; Nyblom, Mia; Stenius, Aino; Lernmark, Åke; Agardh, Daniel; Almgren, Peter; Andersson, Eva; Andrén-Aronsson, Carin; Ask, Maria; Karlsson, Ulla Marie; Cilio, Corrado; Bremer, Jenny; Ericson-Hallström, Emilie; Gard, Thomas; Gerardsson, Joanna; Hansson, Gertie; Hansen, Monica; Hyberg, Susanne; Håkansson, Rasmus; Johansen, Fredrik; Jonsson, Linda; Larsson, Helena; Lernmark, Barbro; Markan, Maria; Massadakis, Theodosia; Melin, Jessica; Månsson-Martinez, Maria; Nilsson, Anita; Rahmati, Kobra; Järvirova, Monica Sedig; Sibthorpe, Sara; Sjöberg, Birgitta; Skogberg, Anna; Törn, Carina; Wallin, Anne; Wimar, Åsa; Åberg, Sofie; Hagopian, William A.; Yan, Xiang; Killian, Michael; Cowen Crouch, Claire; Hay, Kristen M.; Ayres, Stephen; Adams, Carissa; Bratrude, Brandi; Coughlin, David; Fowler, Greer; Franco, Czarina; Hammar, Carla; Heaney, Diana; Marcus, Patrick; Meyer, Arlene; Mulenga, Denise; Scott, Elizabeth; Skidmore, Jennifer; Stabbert, Joshua; Stepitova, Viktoria; Williams, Nancy; Becker, Dorothy; Franciscus, Margaret; Dalmagro-Elias, Mary Ellen; Daftary, Ashi; Krischer, Jeffrey P.; Abbondondolo, Michael; Ballard, Lori; Brown, Rasheedah; Burkhardt, Brant; Cuthbertson, David; Eberhard, Christopher; Fiske, Steven; Gowda, Veena; Hadley, David; Lee, Hye Seung; Liu, Shu; Lynch, Kristian; Malloy, Jamie; McCarthy, Cristina; McLeod, Wendy; Smith, Laura; Smith, Susan; Uusitalo, Ulla; Vehik, Kendra; Washington, Earnest; Yang, Jimin; Akolkar, Beena; Briese, Thomas; Erlich, Henry; Johnson, Suzanne Bennett; Oberste, Steve.
In: Contemporary Clinical Trials, Vol. 33, No. 4, 07.2012, p. 633-640.Research output: Contribution to journal › Article › peer-review
}
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 -