FY23 Accelerate

Appalachian and Inner-City Pediatric, Adolescent, and Young Adult Cancer Data Ecosystem (ACCELERATE) Consortium Project Abstract The National Cancer Institute (NCI) recognizes pediatric, adolescent and young adult (PAYA) cancer patients as a special and understudied population with approximately 90,000 individuals ages 0-39 diagnosed with cancer in the United States (US) each year. Cancer is the leading cause of disease-related death in the PAYA population. Survival of PAYA cancer has shown improvements over time. However, survival improvements in the AYA population lag behind those observed in children and older adults for several cancers. Many cancers remain incurable and severely burdensome for these individuals and their families. Our ability to accurately assess the costs and understand the needs of this unique population of cancer patients remains limited due to the lack of accessible high-quality data on a population scale. We propose to form a data sharing consortium of leading cancer centers within the most PAYA cancer burdened region in the United States to aggregate, integrate, connect clinical and molecular data to catalyze collaborative research. The overall goal of this proposal is to formulate the Appalachian and Inner-City Pediatric, Adolescent, and Young Adult Cancer Data Ecosystem (ACCELERATE) Consortium. Initial consortium members shall include the University of Kentucky Markey Cancer Center, University of Louisville Brown Cancer Center, Norton Healthcare/Norton Children’s Hospital and West Virginia University Cancer Institute. The Children’s Hospital of Philadelphia will contribute expertise in genomic and clinical data harmonization for submission to a Cancer Research Data Commons hosted by the Kentucky Cancer Registry. The Consortium will assimilate a near population-based repository of clinical and molecular data along with the deployment of informatics applications to render these data findable, accessible, interoperable, and reusable for Consortium members. We propose four key aims. The first aim involves the formal development of the legal and ethical data governance framework to ensure patient confidentiality, data security and Institutional Review Board approvals necessary for data sharing and robust use of data for research. The second aim includes the development of data specifications and requirements for acquisition and submission of clinical, sequencing and pathology data from Consortium members and their sequencing providers. The third aim consists the data acquisition, harmonization, and integration in the Cancer Research Data Commons. The fourth aim will deploy informatics portals and reporting mechanisms to make data widely accessible to Consortium members. Representative data from two highly cancer burdened and underserved populations (Appalachian and inner-city Louisville) and the infrastructure to support collaborations among Consortium members and other researchers has tremendous potential to attract the resources necessary to sustain this effort well beyond the project period.