Retaining Adolescent and Young Adult Participants in Research During a Pandemic: Best Practices From Two Large-Scale Developmental Neuroimaging Studies (NCANDA and ABCD).

Kate B Nooner,Tammy Chung,Zjanya Arwood,Sandra A Brown,Sarah W Feldstein Ewing,Linda Cottler,Ty Brumback,Susan F Tapert

doi:10.3389/fnbeh.2020.597902

Abstract

The novel coronavirus pandemic that emerged in late 2019 (COVID-19) has created challenges not previously experienced in human research. This paper discusses two large-scale NIH-funded multi-site longitudinal studies of adolescents and young adults – the National Consortium on Alcohol and Neurodevelopment in Adolescence (NCANDA) and the Adolescent Brain Cognitive Development (ABCD) Study – and valuable approaches to learn about adaptive processes for conducting developmentally sensitive research with neuroimaging and neurocognitive testing across consortia during a global pandemic. We focus on challenges experienced during the pandemic and modifications that may guide other projects, such as implementing adapted protocols that protect the safety of participants and research staff, and addressing assessment challenges through the use of strategies such as remote and mobile assessments. Given the pandemic’s disproportionate impacts on participants typically underrepresented in research, we describe efforts to retain these individuals. The pandemic provides an opportunity to develop adaptive processes that can facilitate future studies’ ability to mobilize effectively and rapidly.

Highlights

The novel coronavirus that hit the world in the latter part of 2019 (COVID-19) has changed the global research landscape
Given the extensive use of cleaning supplies to disinfect rooms and equipment, and protective equipment (PPE) by study staff and participants, projects need to budget for increased costs
Both consortia and individual sites have discussed how having staff and participants wear PPE may impact retention and performance on study measures

Summary

Introduction

The novel coronavirus that hit the world in the latter part of 2019 (COVID-19) has changed the global research landscape. Between in-person visits, a brief virtual mid-year assessment maintains participants’ connection with the study, updates contact information, and collects interim data on mental health and substance use. Common features of NCANDA and ABCD include consortium-wide development of safety protocols for staff and participants to minimize infection risk, and allowance for sites to determine when any on-site assessment activity is safe.

Results

Conclusion