Remote and at-home data collection: Considerations for the NIH HEALthy Brain and Cognitive Development (HBCD) study

The NIH HEALthy Brain and Cognitive Development (HBCD) study aims to characterize the impact of in utero exposure to substances, and related environmental exposures on child neurodevelopment and health outcomes. A key focus of HBCD is opioid exposure, which has disproportionately affected rural areas. While most opioid use and neonatal abstinence syndrome has been reported outside of large cities, rural communities are often under-represented in large-scale clinical research studies that involve neuroimaging, in-person assessments, or bio-specimen collections. Thus, there exists a likely mismatch between the communities that are the focus of HBCD and those that can participate. Even geographically proximal participants, however, are likely to bias towards higher socioeconomic status given the anticipated study burden and visit frequency. Wearables, ‘nearables’, and other consumer biosensors, however, are increasingly capable of collecting continuous physiologic and environmental exposure data, facilitating remote assessment. We review the potential of these technologies for remote in situ data collection, and the ability to engage rural, affected communities. While not necessarily a replacement, these technologies offer a compelling complement to traditional ‘gold standard’ lab-based methods, with significant potential to expand the study’s reach and importance.