About UPMC Cancer Centers Registry Information Services
Registry Information Services is an emerging division of UPMC Cancer Centers. This service isseparated into two distinct sub-divisions within the UPMC Network Cancer Registry, one handling
data collection and dissemination for clinical and hospital operational purposes and the other dedicated to specific efforts and data needs of the research community of the Centers of
Excellence within the UPMC Cancer Centers and the University of Pittsburgh Cancer Institute (UPCI).
The UPMC Network Cancer Registry is comprised of over 40 full time staff responsible for
maintaining a standardized data system designed for the collection, management and analysis
of patient demographic, grading, staging, treatment and progression data on patients having
a diagnosis of cancer. It is also a key source for Honest Broker Services established in May 2003
to meet the needs of our oncology research environment here at UPMC Cancer Centers.
Standardized data is captured for all reportable diagnoses in accordance with Commonwealth of Pennsylvania's Department of Health regulations. Due to these public health agency regulations, this registry process is exempt from HIPAA consenting processes. Most facilities within the Registry also adhere to the voluntary standards set forth by the American College of Surgeons Commission on Cancer for approved cancer programs. Primary sources for data extraction are both paper and electronic medical records. Data is abstracted via manual and electronic methods into the cancer registry database by Certified Cancer Registrars. Registry data includes demographics, personal and medical history, diagnostic findings, primary cancer identification, staging, grading, treatment and outcomes The entire UPMC Network Cancer Registry information system is architected on the North American Association of Central Cancer Registry (NAACCR) data standards.
Facilities
The Registry currently includes data on patients from 13 hospital-based registries from the following UPMC facilities:Use of Registry Data
The UPMC Network Cancer Registry accessions an overall volume of over 24,000 new cases per calendar year, including over 13,000 reportable cases and over 11,000 non reportable cases (minimal data collected for annual reconciliation with the Pennsylvania Department of Health). Today, there are more than 320,000 records in the Registry with many facilities recording data starting as early as 1988. The data is used for various meetings, educational activities, quality improvement projects, administrative planning, and of course incidence reporting. Additionally, requests for purposes of preparing for research and IRB approved and IRB-exempt research for the University of Pittsburgh Cancer Institute and UPMC Cancer Centers, including, but not limited to, tissue annotation activities through cooperative efforts with the Health Sciences Tissue Bank (HSTB) of UPMC. Registry Information Services has completed approximately 2,020 total requests between 2004-2008, or an average of 404 requests per year.. (Last Updated July 2009)