U2CCA252979

Optimizing Engagement in Discovery of Molecular Evolution of Low Grade Glioma (OPTIMUM) - 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 the time of diagnosis and at the 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.

Yale Univ

TO PROVIDE SUPPORT FOR INITIATIVES FUNDED UNDER THE 21ST CENTURY CURES ACT TO SUPPORT CANCER RESEARCH, SUCH AS THE DEVELOPMENT OF CANCER VACCINES, THE DEVELOPMENT OF MORE SENSITIVE DIAGNOSTIC TESTS FOR CANCER, IMMUNOTHERAPY AND THE DEVELOPMENT OF COMBINATION THERAPIES, AND RESEARCH THAT HAS THE POTENTIAL TO TRANSFORM THE SCIENTIFIC FIELD, THAT HAS INHERENTLY HIGHER RISK, AND THAT SEEKS TO ADDRESS MAJOR CHALLENGES RELATED TO CANCER.

93.353 - 21st Century Cures Act - Beau Biden Cancer Moonshot

National Cancer Institute (NCI) [HHS - NIH]

New Haven, Connecticut 065103201 United States

Single Zip Code

Participant Engagement and Cancer Genome Sequencing (PE-CGS): Research Centers (U2C Clinical Trial Optional) (RFA-CA-19-045)

Amendment Since initial award the End Date has been extended from 08/31/25 to 08/31/27 and the total obligations have increased 250% from $3,122,950 to $10,929,171.