FY27 Accelerate Consortium Continuation

The National Cancer Institute (NCI) recognizes pediatric, adolescent, and young adult (PAYA) cancer patients as a special and understudied population. In Kentucky, approximately 1,371 patients ages 0-39 are diagnosed with cancer each year. Cancer is the leading cause of disease-related death in the PAYA population. Particularly among children, cancers such as Diffuse Midline Glioma, remain incurable. Every childhood cancer diagnosis is severely burdensome for the patients and their families. Survival of PAYA cancer has shown improvements over time but varies widely by cancer type and region. For example, recent data from the Kentucky Cancer Registry (KCR) show lower survival rates for patients with high-grade brain and central nervous system tumors compared to survival in the United States (U.S.). Within Kentucky, KCR data show lower survival rates in the Appalachian region compared to the non-Appalachian region for all cancer types combined. Broader community sharing of clinical care and research data generated by children’s hospitals and clinics is widely seen as essential to learn faster and on a much larger scale than any single institution caring for PAYA patients can learn on its own (see NCI Childhood Cancer Data Initiative). In 2022, the Kentucky Pediatric Cancer Research Trust Fund provided support to establish the Appalachian and Inner-City Pediatric, Adolescent, and Young Adult Cancer Data Ecosystem (ACCELERATE) Consortium. ACCELERATE is a unique data sharing consortium among leading regional cancer centers to aggregate, integrate, harmonize and disseminate high quality registry, clinical, and molecular data to facilitate and catalyze collaborative PAYA cancer research. To date, ACCELERATE, has enjoyed the active participation of the KCR, University of Kentucky Markey Cancer Center, University of Louisville Brown Cancer Center, Norton Children’s Hospital and West Virginia University Medicine Women & Children’s Hospital, and the Children’s Hospital of Philadelphia (CHOP). We have established a formal data governance framework that permits sharing of de-identified demographic, diagnostic, treatment and outcome cancer registry data linked with harmonized molecular test results from next generation sequencing (NGS) of PAYA tumors. We have developed methods to harmonize NGS test results from laboratories such as Foundation Medicine, Caris Life Sciences, Tempus, and others. To our knowledge, this is the only data sharing consortium focused on PAYA cancer patients in Kentucky and the Appalachian region. To date, we have assimilated the largest collection of integrated clinical and molecular data, including raw data files, that is representative of this population. Data are made available for discovery and further research through a cBioPortal instance developed for ACCELERATE. For the continuation of ACCELERATE we propose four aims. The first aim is to continue the legal and ethical data governance framework that ensures patient confidentiality, data security and Institutional Review Board approvals necessary for data sharing and robust use of data for research. The second aim involves continued development of interoperable data standards for ACCELERATE that supports member data use and collaboration with other researchers, consortia, and data repositories. The third aim continues data acquisition, harmonization, and integration into the ACCELERATE Cancer Research Data Commons. The fourth aim is to expand membership, provide ongoing support for cBioPortal, and promote ACCELERATE for collaborative research studies.