About UPMC Cancer Centers Registry Information Services
Registry Information Services is an emerging division of UPMC Cancer Centers. This service is
separated 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 was expanded to community-based UPMC Cancer Center Community as of January 2004. The
Registry currently includes data on patients from 40 UPMC managed facilities, including 12
hospital-based registries from the following UPMC facilities and five standalone cancer centers
and 23 medical oncology offices:
UPMC Bedford
UPMC Braddock
Childrens Hospital of Pittsburgh of UPMC
UPMC Horizon
Magee Womens Hospital of UPMC
UPMC McKeesport
UPMC Northwest
UPMC Passavant
UPMC Presbyterian
UPMC Shadyside
UPMC South Side
UPMC St. Margaret
UPMC Cancer Centers Network Locations
Use of Registry Data
The UPMC Network Cancer Registry accessions an overall volume of over 35,000 new cases per calendar year, including over 18,000 reportable cases and over 17,000 non reportable cases
(minimal data collected for annual reconciliation with the Pennsylvania Department of Health). Today, there are more than 300,000 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 completed a total of 480 requests in calendar year 2007, down 14% from the 559 requests filled in calendar year 2006. This can be attributed to staff vacancies in two disease-specific registry positions and recruitment and training of a new Manager of Research Registry Information Services. Overall, between 2004 and 2007, RIS has experienced a 224% increase in use of registry data. In 2004, there were 148 completed requests, in 2005 we completed 449 requests.
(Last Updated March 26, 2008)
