Total Cancer Care is Moffitt Cancer Center’s comprehensive approach to cancer that enables researchers and caregivers to identify and develop new ways to treat patients in the future. A major component of Total Cancer Care is Personalized Cancer Care. Key elements of this approach to cancer include:
- Partnerships with patients for research, data and tissue collection through lifetime participation
- A protocol-specific Tissue Repository and Data Warehouse
- Data warehouse access portals provided to clinicians and researchers
Implementing Total Cancer Care requires an extensive infrastructure to collect, organize, evaluate and disseminate a vast amount of information. It is the broad scope that makes Total Cancer Care unique and offers the potential for research that will change the standard of care. The building blocks of Total Cancer Care include the following:
- Patients: Patient participation and interest is the single most critical component of Total Cancer Care. A single protocol was developed to provide tissue collection and longitudinal data collection over a patient’s lifetime through a safe, efficient and consistent process. More than 150,000 patients have consented to be part of Total Cancer Care and are active participants in changing the way we think about cancer.
- One Protocol: A unique and comprehensive protocol focused on the collection of blood, tissue, other biological samples and patient data from surveys, medical records, cancer registry data and other related data from medical histories.
- Centralized Tissue Banking: Total Cancer Care collects tumor, blood and urine samples as well as clinical data such as risk factors, therapies and outcomes. All tissues are snap-frozen within minutes and bar code labeled. Tissue samples are macrodissected to 85% purity and quantified for the percent of malignancy, cellularity, stroma, normalcy and necrosis. To date, more than 100,000 specimens have been gathered including nearly solid tumors and liquid samples including bone marrow, whole blood, plasma and urine. This number will grow exponentially in the coming years.
- The physical Biorepository is critical for the collection and storage of samples. All samples collected under the Total Cancer Care protocol are stored in a single location at Moffitt Cancer Center. A large biobank, based in Tampa, will store 120,000 samples. An oversight committee and detailed operational procedures ensure proper access and use of tissue, including meeting all HIPAA requirements.
- Lifetime prospective follow-up: Lifetime partnership with patients is critical to developing and evaluating the quality of care. Through this study, patients share medical histories, may complete surveys and may be asked to participate in studies tied to Total Cancer Care. Follow-up will allow for the development of biomarkers, epidemiological studies and the development of evidence-based practice guidelines. Data related to survivorship is collected and is of added importance to patients and their ongoing needs.
- Research Partnerships: In order to meet the needs of researchers and provide a world-class infrastructure, Total Cancer Care has developed an innovative business model that includes research partnerships with patients, research centers, academic institutions and industry including the partnership through ORIEN. Bringing together patients, research and doctors, enables us to change the way we think about cancer.
- Multi-dimensional Data Warehouse – Moffitt Cancer Center has established a data warehouse to collect, relate and interpret clinical data and molecular data from patients. The warehouse includes but is not limited to community partner site data, patient records, medical history, registry data, molecular profiles, gene expression data and clinicopathologic data. All data is stored and utilized in compliance with HIPAA requirements. Currently, the warehouse is over 1 terabyte of data, 30 terabytes if images are counted. Within years, it is expected to surpass 10 terabytes of data. Appropriate access is given to the clinician and researcher to lead to the creation of evidence-based guidelines with guidance provided by honest brokers.
- The Oncology Research Information Exchange Network (ORIEN) is a growing alliance of leading cancer centers committed to speeding up research through collaboration and access to shared patient data. The more diverse our patient population, the more connections we can make.