An important cancer research challenge is accessing substantial quantities of patient data collected while providing clinical care. At the last CCSG review, the reviewers encouraged the Moffitt Cancer Center (MCC) to develop a service facilitating member access to the data customarily collected on all cancer patients that is needed to conduct high-impact transdisciplinary research. As a result, in 2013, the MCC developed a core expressly designed to facilitate access to patient data, leveraging the MCC enterprise-wide Heath Research Informatics (HRI) data warehouse with discretely captured patient-level data (e.g., patient questionnaires, cancer registry, electronic health records, billing, and the Tissue Core biospecimen archive) on over 475,000 MCC patients. This MCC initiative developed the Collaborative Data Services Core (CDSC), now a fully- functioning core. The CDSC is a unique shared resource that facilitates MCC member use of patient-reported clinical, tumor, and biospecimen data in support of innovative research across all research programs. The CDSC supports members with three primary services: consultation, data provisioning, and study-specific medical record abstraction.
The specific aims that drive the CDSC are to: 1) Promote and facilitate cutting-edge translational research by providing members access to high- quality discrete patient-level data linked within MCC's enterprise-wide data warehouse and cost-efficient collection of clinical data from patient medical records; 2) Assist investigators at the early stages of developing research projects with consultations on study data access and project feasibility through provisioning of aggregate count data from the MCC HRI data warehouse; 3) Promote data access and data provisioning by providing individual or small group training, workshops, and data concierge training. The CDSC is led by Scientific Director Erin Siegel, PhD, MPH, who has extensive experience conducting epidemiological studies utilizing the HRI resource. The CDSC is also supported by a Facility Director, a Core Manager, and six staff members. In fiscal year 2015, the CDSC fulfilled service requests for 79 members across all five CCSG programs, which represents 72% of the total usage; 47% of usage was in support of peer-review funded members. During the five-year project period, the CDSC has contributed to at least 102 peer-reviewed publications and 31 peer-reviewed funded grants. The CDSC provides unique data provisioning and manual data abstraction services integrated in a typical project workflow in collaboration with several shared resources, including the Tissue Core, Biostatistics Core, and Cancer Informatics Core; it provides members access to enterprise-wide patient data to conduct cutting-edge, high-impact translational and personalized medicine research.
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