Centralized registry for COVID-19 research recruitment: Design, development, implementation, and preliminary results

Abstract

This version may be subject to change during the production process.

Cardiac postacute sequelae symptoms of SARS-CoV-2 in community-dwelling adults: cross-sectional study

“…The cardiac PASC study is an ongoing prospective study that began in 2021. This nested substudy includes a cross-sectional study of baseline data of adults enrolled in the Johns Hopkins COVID-19 Hopkins Opportunity for Participant Engagement (HOPE) Registry 5 6. This centralised database contains information on participants interested in COVID-19 studies at Johns Hopkins University.…”

Integrating special and underserved populations in translational research: Environmental scan of adaptive capacity and preparedness of Clinical and Translational Science Award (CTSA) program hubs

“…However, we must go beyond lauding the technology and think how much of these innovative approaches exacerbated the limited access, potentially widened informational gaps, and continued under-serving of SUPs. For instance, the HOPE Registry [26] deliberately sought to engage patients and community stakeholders in all phases of the registry's development, implementation, and evaluation. By listening to the needs and preferences of the different SUP communities (related to awareness of research opportunities, outreach messages, consent language, etc.…”

“…In an attempt to leverage prior successes with recruitment registries, the Johns Hopkins Institute for Clinical and Translational Research (ICTR) sought to respond to the crisis by developing a COVID-19 registry (HOPE Registry) [26] to help study teams in expediting access to study participants and achieving their recruitment goals. The registry also sought to become an information tool (in terms of eligibility and convenience of access, especially remotely) for populations who may have otherwise felt "overwhelmed by outreach from multiple study teams" [26].…”

Digital and virtual strategies to advance community stakeholder engagement in research during COVID-19 pandemic

“…For instance, the Hopkins Opportunities for Participant Engagement (HOPE), a registry developed by the Johns Hopkins Institute for Clinical and Translational Research (ICTR) promotes transparent and equal community participation in COVID-19 related research. 10 While discussing the possibility of virtual community engagement, it is important to understand and address the existing challenges. First, the community is diverse and has disparate access to technology resources such as computers, tablets, smartphones, and high-speed internet.…”

“…Some of the opportunities include providing a platform to enhance equity in access to research. For instance, the Hopkins Opportunities for Participant Engagement (HOPE), a registry developed by the Johns Hopkins Institute for Clinical and Translational Research (ICTR) promotes transparent and equal community participation in COVID-19-related research [10].…”