# Racial and ethnic differences in the degree of participation and retention in a decentralized cohort study of COVID-19 immunization in patients with inflammatory bowel diseases

## TL;DR

This study found that non-Hispanic White participants in a decentralized research study on COVID-19 immunization in inflammatory bowel disease patients were more likely to stay engaged and complete tasks compared to Black and Hispanic participants.

## Contribution

The study highlights racial and ethnic disparities in post-enrollment participation in decentralized clinical research.

## Key findings

- Non-Hispanic White participants had higher follow-up survey completion rates (95%) compared to Black (87%) and Hispanic (91%) participants.
- Non-Hispanic White participants were more likely to donate blood samples (73%) than Black (64%) and Hispanic (67%) participants.
- Consent for future research was higher among non-Hispanic White participants (65%) compared to Black (62%) and Hispanic (52%) participants.

## Abstract

Disparities in the recruitment of minority populations in research are well-documented. However, the degree of participation and retention of minorities following enrollment is less known, particularly in decentralized studies. Although decentralized clinical research methods may allow researchers to engage broader study populations with less participation burden, they may present different retention challenges. To evaluate racial and ethnic differences in the degree of participation after enrollment in a decentralized study, we analyzed data from a cohort of patients with inflammatory bowel diseases following COVID-19 immunization.

We compared by race and ethnicity the following post-enrollment participation metrics: response to > 50% of follow-up surveys, donation of a blood sample for antibody testing, consent to use of bio samples for future research, and withdrawal prior to study completion.

Overall, we observed higher levels of post-enrollment study participation among non-Hispanic White (NHW) participants as compared to Black or Hispanic participants: 95% of NHW participants completed follow-up versus 87% of Black participants and 91% of Hispanic participants, 73% of NHW participants provided bio samples versus 64% Black participants and 67% Hispanic participants, and 65% of NHW participants provided consent for future research versus 62% of Black participants and 52% of Hispanic participants.

Our findings demonstrate that the degree of study participation after enrollment in this decentralized study differed by race and ethnicity, indicating that attention to diversity, equity, and inclusion is needed not only in clinical research recruitment but also throughout study administration.