S3268 Development and Implementation of EGID Partners: A Global, Online, Patient-Centric Research Platform

Abstract

Introduction: Eosinophilic GI diseases (EGIDs) include eosinophilic esophagitis (EoE), gastritis (EG), gastroenteritis (EGE), and colitis (EC) and represent a substantial burden to patients and caregivers. We aimed to develop and implement a global, online, patient-centric research platform to provide a foundation for studies of EGIDs. Methods: Patient advocacy groups (PAGs) and EGID researchers collaborated to design EGID Partners (egidpartners.org) and enroll both cases and controls. The overall structure included baseline surveys followed by updates every 6 months. At follow-up, new surveys could also be deployed. There were 8 possible pathways: EoE adults (≥18 years); non-EoE EGID adults; adults with both EoE and EGID; non-EGID adult controls; and these same groups but for caregivers of children < 18 years of age. Recruitment is rolling, with baseline surveys including demographics, disease and medical history, treatment history, and validated patient-reported outcomes (PROs) for symptoms and quality of life. Baseline surveys also included assessment of early life exposures and patient-level costs, health utilization, and burden of disease. A multifaceted recruitment plan was instituted with informational emails and social media campaigns from PAGs, directed messages to EGID patients through medical record patient portals, webinars, and by publicizing the platform among physicians and at meetings. Results: EGID Partners was launched in October, 2020 (Fig. 1A). To date, 360 subjects (Partners) have joined, including 330 cases and 30 controls; 290 were adults and 70 were caregivers. There were 256 with EoE, 7 with EG, 14 with EGE, 5 with EC, and 78 with overlapping EGIDs (38 of whom had esophageal involvement). Partners have joined from 14 countries, with most from the US (295, from 36 states) and Australia (35). Recruitment increased steadily, but with notable spikes after webinars and patient portal messages (Fig. 1B). Six months after launch, a new follow-up survey was deployed to assess selected non-GI symptoms in EGID patients. Conclusion: We successfully developed and implemented EGID Partners, a patient-centric, online research platform. Despite the rarity of these diseases, patients from around the world and across all EGID types were recruited within a short period of time. The goal is for EGID Partners to expand into a patient-powered research network, with future research informed by patient, PAG, and researcher input.Figure 1.: Development and recruitment for EGID Partners. The home page (A) and recruitment trends (B) are displayed.