NIH Research Festival
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The Clinical Genetics Branch (CGB) includes an internationally recognized group of researchers and clinicians who approach research predicated on clinical observation, etiologic discovery, and application of findings to clinical care for families with rare cancers or cancer predisposition. Together with the Centers for Biomedical Informatics and Information Technology (CBIIT), CGB has developed a cutting-edge, patient-facing, ServiceNow (SNow) portal to facilitate participant enrollment, consent, and data collection, thus replacing costly manual and paper data collection. This management system, termed the Communications Hub and Study Management System (CHARMS), has been paired with a robust provider-facing system for study management, data maintence, and data analysis. CGB capitalized on a pre-existing NIH SNow license to create this new state-of-the-art study management system, reducing financial burden on the National Cancer Institute (NCI). Since 2019, CGB has used CHARMS to open three research studies, collect and synthesize data from seven unique electronic surveys instantaneously, and enroll 1,500+ individuals. CHARMS was crucial to the rapid establishment of a SARS-CoV-2 study to understand genetic contributions to COVID-19 disease severity. Existing data for ~75,000 historical study participants have been imported into CHARMS for ongoing data management with potential to activate participant portal accounts in the future. CHARMS is designed to easily integrate with multiple external platforms (Qualtrics, Power BI, and Medidata) enhancing questionnaire and data management possibilities. CGB/CBIIT’s unique approach to bespoke customization of an established platform has refined clinical research at CGB while delivering on the urgent need for an adaptable and cost-effective clinical data management system.
Scientific Focus Area: Research Support Services
This page was last updated on Tuesday, August 6, 2024