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Differences in recruitment and early retention among ethnic minority participants in a large pediatric cohort: the
Judith Baxter1, Kendra Vehik, Suzanne Bennett Johnson
1Barbara Davis Center for Childhood Diabetes, School of Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO 80045, USA. judy.baxter@ucdenver.edu
Insights
Ethnic minority (EM) children in the TEDDY study showed higher exclusion and withdrawal rates, particularly Hispanic subjects, impacting type 1 diabetes (T1D) research enrollment and retention. Strategies are needed to improve EM inclusion.
Area of Science:
- Pediatric Endocrinology
- Clinical Research
- Genetics
Background:
- Type 1 diabetes (T1D) etiology is influenced by genetic and environmental factors.
- The Environmental Causes of Diabetes in Children (TEDDY) study aims to identify T1D triggers in genetically susceptible children.
- Understanding ethnic minority (EM) participation is crucial for generalizability.
Purpose of the Study:
- To investigate ethnic minority differences in enrollment and retention within the US centers of the TEDDY Study.
- To identify factors influencing participation of diverse populations in T1D research.
- To inform strategies for equitable research inclusion.
Main Methods:
- Prospective, multi-center study design.
- Screening of newborns for high-risk T1D genotypes.
- Descriptive and logistic regression analyses of enrollment and withdrawal data for EM groups.
Main Results:
- EM subjects faced higher exclusion rates due to difficulties in contact.
- Enrollment odds were similar across most EM groups, except for 'other EM'.
- EM subjects exhibited higher early withdrawal rates, significantly more so among Hispanic participants.
Conclusions:
- Patterns of EM participation in research are critical for accurate inferences.
- Addressing disparities in research inclusion is essential for understanding T1D.
- Strategies to promote EM inclusion are necessary to improve health equity in T1D research.
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.
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