History
The Yale-New Haven Hospital (YNHH) began collecting information about its cancer patients in 1926, and developed the first hospital-based cancer registry in the country. In addition to being among the first reporting institutions to the State Tumor Registry, and therefore to the NCI’s SEER program, the YNHH registry also reports cases annually to the National Cancer Center Database (NCDB), a joint venture of the American College of Surgeons (ACoS) Commission on Cancer (COC) and the American Cancer Society (ACS). Reporting of cases to the NCDB is a requirement for hospitals to become an ACoS-approved cancer program.
The YNHH tumor registry operated on paper prior to the 1970s. An electronic storage system based on the “DataTrieve” database available from Digital Equipment Corporation (DEC)began to be used in the 70s, with a “preload” of historical data from the State tumor registry. In September of 1993, a new relational database system went live, transferring all of the data from the old system. The “new” software and database was based on the Professional Database Analysis System (PRODAS) environment on a Digital Equipment Corporation (DEC) VAX workstation with the VMS operating system. This system was developed in-house and was extensively customized and improved over two decades.
In 2005, aging computer hardware, decreased support for the software, and staffing changes in tumor registry personnel created an opportunity for another quantum leap forward in patient cancer data management. YNHH acquired commercial tumor registry software to meet its reporting requirements, but it was clear that this software would not meet the long term needs for clinical research.
The Pathology Informatics Program proposed creating and managing a new data solution to begin to meet the needs of clinical researchers for case identification and follow-up. The new Cancer Data Repository would serve as an institution-wide resource for longitudinal, disease-based clinical data management for regulatory, quality assurance, and clinical research purposes. The resource is intended to be scalable, multi-platform accessible, multi-user accessible, robust and secure, complying with all HIPAA requirements for patient privacy and data security. The proposal was accepted by both the Yale-New Haven Hospital and the Yale University School of Medicine in the middle of 2005, and development began within the Pathology Informatics Program under the leadership of John Sinard, M.D., Ph.D. It is hoped that the product of this effort may serve as a test-model for subsequent development of a more comprehensive institutional clinical data repository, expanding beyond the scope of cancer patients into other disease units.
