City of Hope information scientists are leading a charge to compile information on patients with colorectal cancer for the National Comprehensive Cancer Network’s (NCCN) database, a resource that will illuminate patterns of cancer care nationwide.

Colorectal cancer is the third type of cancer to be studied in the NCCN Outcomes Project, joining breast cancer and non-Hodgkin’s lymphoma, said Joyce Niland, Ph.D., chair of the Division of Information Sciences at City of Hope.

City of Hope is the national data-coordinating center for the project, led by Niland.  The NCCN, now a network of 20 cancer centers, began the Oncology Outcomes Project in 1996. “One of the NCCN’s earliest projects was to create guidelines of care,” Niland explained. “As that was launched, we wanted a way to measure how closely we’re following these care guidelines in our centers, and how we are doing with patient outcomes.”

An initial pilot group of five member institutions, including City of Hope, started tracking patients with breast cancer through the Web-based data system created by the Division of Information Sciences in 1997. Since then, participating institutions have grown to 11 for breast cancer; then non-Hodgkin’s lymphoma was added in 2000, with six centers participating.  More than a million data records on more than 25,000 patients have been collected in the repository housed at City of Hope, and these are being mined to answer many questions about treatment patterns, time trends and patient outcomes.

Clinical research associates began working on the new colorectal cancer database in January. They are collecting colorectal cancer cases back to September 2005, Niland said. The principal investigators for the City of Hope colorectal cancer protocol are Lily Lai, M.D., assistant professor of surgery, and Stephen Shibata, M.D., associate professor of medical oncology and director of the Gastrointestinal Cancer Program.

Physicians in the gastrointestinal program are excited about the database’s research potential. The colorectal cancer database will not only contain information about the patient’s history, tumor site, course of treatment and similar characteristics, but also will be linked to information on blood samples. In the future, researchers also want to include tissue samples. 

“We’ll be able to start asking some questions about colorectal cancer that we haven’t been able to do in the past,” Shibata said.

The Oncology Outcomes Project databases include patients who receive standard care, as well as those in clinical trials, Niland noted. Beyond the data collected for the NCCN project, City of Hope information scientists are expanding on the NCCN breast cancer, lymphoma and colorectal cancer databases for the institution’s own research, expanding categories of information that are abstracted and analyzed.

Internal databases exist or are being created at City of Hope for other types of cancer as well, she noted. Over time, as City of Hope’s strategic plan evolved to focus on key disease programs, researchers decided to collect core data on patients in those programs.

“Prostate cancer was one of the first,” Niland explained, because surgeons wanted to study the success of their robotic, laparoscopic procedures such as robot-assisted prostatectomies.

Rebecca Nelson, Ph.D., an epidemiologist in the Division of Information Sciences, has helped develop the infrastructure for the urology group. She also is working on analyses for the liver cancer database that was organized by NCCN Project Administrator Layla Rouse and directed by surgeon Lawrence Wagman, M.D. Other cancers to have disease program databases developed include lung, brain and musculoskeletal. Information Sciences created a disease database for the lymphoma/leukemia program several years ago.

With so many disease types and sites, information scientists must try to coordinate the way they keep data with colleagues around the nation and world, to speed biomedical research globally. That is why City of Hope is a lead developer in efforts such as the clinical trials area of the cancer Biomedical Informatics Grid, dubbed caBIG, an initiative led by the National Cancer Institute. Through several working groups, City of Hope is taking a leadership role in developing common clinical research information standards worldwide.