OPTimIzing engageMent in discovery of molecular evolution of low grade glioma (OPTIMUM)

项目总结

PROJECT SUMMARY Lower grade (World Health Organization (WHO) grade II/III) glioma (LGG), a malignant tumor of the brain, is a uniformly fatal disease of young adults. The optimal clinical management for LGG remains unknown. A comprehensive genomic characterization of the evolution from primary LGG to recurrence is required to begin to address the LGG knowledge gap; optimizing the engagement of LGG patients in this effort is critical to the success of this process. Using our International Low Grade Glioma Registry as a starting point, we will construct a community of 700 LGG patients who have undergone surgical resection at time of diagnosis and at time of recurrence and want to participate in research. We will use both hospital-based as well as web- and social media-based patient engagement efforts and adapt pre-existing resources developed at Yale including HUGO PHR, a secure cloud-based personal health record platform that allows secure and permission-based movement of data bi-directionally between patients and researchers and ARCHETYP, a Yale-developed software that assists patients in the location of clinical trials. We hypothesize that LGG patient engagement and satisfaction (and thus overall participation) in genomic characterization studies will be improved by 1) the ability to obtain and share medical record data with researchers, 2) the availability of bi-directional communication between study and patients regarding study focus, progress, outcomes as well as patient specific results, 3) improved messaging and education regarding study and patient goals with respect to genomic characterization of patient materials. We also propose that the knowledge gained in this application will provide a significant improvement in the care of LGG patients.