REDCap UVA Vascular Neurology Database (P5.139)

Background: Clinical research in cerebrovascular diseases has become increasingly collaborative and relies on data collected at clinical care onset. Ways to efficiently and systematically capture data that are secure, adaptable, and shareable is imperative. The Research Electronic Data Capture (REDCap) system, developed for an NIH-funded national consortium, holds great promise as a free, de-identifiable, modifiable, and globally accessible web-based database. Objective: To develop a REDCap-based system of data collection encompassing current observational and genetic neuro-vascular research at UVA which will allow for future expansion. Methods: Capturing begins with a general demographics form linking basic neuro-vascular information to individual study-specific questions. The study-specific case report forms capture necessary variables. Clinical phenotypes designated for REDCap entry were matched in our genetic databank via partnership with the UVA Center for Public Health Genomics. Results: We incorporated data forms from ongoing IRB-approved trials focused on neuro-vascular phenotypes (brain and abdominal aneurysms, amyloid angiopathy, cervical artery dissection, intracranial hemorrhage, central venous sinus thrombosis) into one document. A unified and integrated REDCap data capture form with active data entry for 3 of the 5 studies and ongoing recruitment are complete. Prospectively collected data is being uploaded as additional clinical phenotypes are incorporated into the database. Conclusions: This database allows participating clinical researchers access to much information. Future research includes database expansion to capture a broader range of phenotypes not currently the subject of study. Our institution is now able to export our REDCap library to investigators at other institutions to facilitate parallel data collection and eliminate obstacles to collaborative research. Study supported by UL54TR000123, an award from the National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH). The information and views included are those of the author(s) and do not reflect official policy of the NIH or the United States Government. Disclosure: Dr. Rahman has nothing to disclose. Dr. McKinley has nothing to disclose. Dr. Tandy has nothing to disclose. Dr. Southerland has received personal compensation in an editorial capacity for Neurology Podcast. Dr. Worrall has received personal compensation in an editorial capacity for Neurology. Dr. Worrall has received royalty payments from Merritt9s Neurology. Dr. Mehndiratta has nothing to disclose. Dr. Harmon has nothing to disclose.