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Updated: Aug 11, 2025
Establishment of a Clinic-based Biorepository
Published on: May 29, 2017
Barriers to enrollment in a pediatric critical care biorepository
Erin Paquette1,2, Avani Shukla3, Tracie Smith4
1Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA. epaquette@luriechildrens.org.
Insights
Minority race/ethnicity and non-English speaking parents had lower enrollment in a pediatric critical care biorepository. Sociodemographic factors significantly impact participation in genomic and critical care research.
Area of Science:
- Genomic Research
- Biorepository Studies
- Pediatric Critical Care
Background:
- Minority race/ethnicity groups show reduced participation in genomic research.
- This study investigates factors influencing enrollment in a pediatric critical care biorepository.
Purpose of the Study:
- To evaluate sociodemographic characteristics associated with enrollment decisions in a pediatric critical care biorepository.
- To identify barriers to participation in critical care research.
Main Methods:
- Retrospective chart review of sociodemographic and clinical data for children admitted to the PICU.
- Analysis of enrollment data using bivariate and multivariable regression.
Main Results:
- Higher odds of incomplete consent were observed for non-English speaking parents and parents of minority race/ethnicity.
- Declined consent was more frequent in patients with Medicaid and from minority race/ethnicity backgrounds.
- Enrollment rates varied significantly based on sociodemographic factors.
Conclusions:
- Sociodemographic factors, including race/ethnicity, language, and insurance, are linked to differential enrollment in pediatric critical care biorepositories.
- Barriers to enrollment exist at multiple stages of the recruitment and consent process.
- Further research is needed to understand participant-study team interactions and their role in enrollment disparities.
Background:
Individuals of minority race/ethnicity have lower rates of participation in genomic research. This study evaluated sociodemographic characteristics associated with decisions to enroll in a pediatric critical care biorepository.
Methods:
Parents of children admitted to the PICU between November 2014 and May 2017 were offered to enroll their child in a biorepository using a single-page opt-in consent. Missed enrollment was assessed by failure to complete the form or declining consent on the form. We conducted a retrospective chart review for sociodemographic and clinical information. Bivariate and multivariable regression analyses were performed.
Results:
In 4055 encounters, representing 2910 patients with complete data, 1480 (50%) completed the consent form and 1223 (83%) enrolled. We found higher odds of incomplete consent for non-English-speaking parents (OR = 2.1, p < 0.0001) and parents of children of all races except non-Hispanic white (OR = 1.27-1.99, p < 0.0001). We found higher odds of declined consent in patients with Medicaid (OR = 1.67, p = 0.003) and parents of children of all races except non-Hispanic white (OR = 1.32-2.9, p < 0.0001).
Conclusion:
Inability to enroll patients in a critical care biorepository may be associated with several sociodemographic factors at various points in recruitment/enrollment.
Impact:
Individuals of minority race/ethnicity are less likely to enroll in genomic research and in critical care research. This study evaluated sociodemographic characteristics associated with decisions to enroll a child in a pediatric critical care biorepository. Sociodemographic factors including race/ethnicity, primary language, and insurance status and patient clinical characteristics are associated with differential enrollment into a pediatric critical care biorepository. More research is needed to understand how study team-participant interactions may play a role in differential enrollment. Barriers to enrollment occur both at the time of approaching and consenting for enrollment.
