In 2008, the American Cancer Society predicted more than 37,000 people would be diagnosed with pancreatic cancer. Researchers at Thomas Jefferson University Hospital hope to track them down.

Last November, the Department of Surgery launched a pancreas tumor registry to locate cancer patients and document their treatment. It's also a family affair--patients are asked to report family history and environmental exposures, while immediate relatives must complete a similar health questionnaire. Researchers hope to find genetic or environmental factors that put people at risk for pancreas cancer--breakthroughs that could improve prevention.     

Start-up poses a wealth of challenges, from finding patients to handling a slew of documentation; in the coming year, Jefferson staff will be researching options, making decisions and crossing fingers for a successful venture. ADVANCE will be stopping by regula

Jennifer Brumbaugh

Getting to Know You
"This is one of the projects that patients have been asking for for years," said Jennifer Brumbaugh, Web master and editor of Surgical Solutions at Jefferson. Brumbaugh has been tackling the IT and information-gathering end of the registry.

The pancreas tumor registry is brand new, but it's based off another successful registry: the Familial Pancreas Tumor Registry at Johns Hopkins University Hospital. The brains behind Jefferson's registry--husband-and-wife duo Charles Yeo, MD, and Theresa Yeo, PhD, MPH, ACNP, and a host of co-investigators--hail from Hopkins; after relocating to Philadelphia, they felt inspired to start a similar program in their new locale.

At Hopkins, Dr. Theresa Yeo completed her doctoral thesis on the pancreas tumor registry and noticed that certain questions, such as occupational and environmental exposures, were not addressed in the Hopkins questionnaire. When she moved to Jefferson, her husband saw about 200 pancreatic cancer patients a year. Starting a registry seemed common sense--with a few tweaks to Hopkins' technique. "We thought we could improve on the questionnaire, knowing the things we know now," Dr. Theresa Yeo said.

Dr. Theresa Yeo

Pancreatic cancer patients and direct relatives of patients can participate in the registry by filling out one of three questionnaires, which are available on Jefferson's Web site. "People can access it from anywhere in the country, or the world for that matter," Dr. Theresa Yeo said.

One questionnaire is designed for pancreas cancer patients to complete on their own; another questionnaire can be completed by a family member on behalf of a patient; and the third is a questionnaire family members can complete about their own medical history and habits.

Jefferson researchers may also request a blood sample, cheek swab or, if possible, tumor tissue, to check for DNA mutations or abnormalities. Dr. Theresa Yeo said the registry will send out a box, which can be taken to a lab for a blood sample. "[Participants] don't have to come here; it can be done anywhere," she added.

Lab results will be filed along with the participants' questionnaires.

Once a case is registered, Jefferson will check in annually to update the patient or family member's file with any changes in health or new diagnoses. The registry will also send out an annual newsletter, which will share any developments or breakthroughs and may feature a unique family or story.

The registry will be a permanent fixture at Jefferson, so Dr. Theresa Yeo hopes to collect as many cases as possible and track them over time. "There's no end date," she said. "This will go on forever."

Plenty of Paper
The questionnaires can be downloaded online, but the registry is currently paper-based. Jefferson has yet to select a software solution for the registry, so Brumbaugh has been keeping hard copies of completed questionnaires on hold.

"[It's] a lot of paper," she said.

At the time of the interview, Brumbaugh said 35 questionnaires had been collected, each about 13 pages long. Tack on lab results, consent forms, medical records--which Dr. Theresa Yeo said she plans to request from patients to confirm a cancer diagnosis--and annual updates, and that's a slew of documentation.

Brumbaugh said she anticipates the registry will progress in two stages. First, data will be submitted in paper format and then manually entered into the database. In the second phase, the registry will be completely electronic, allowing participants to input information through the Web site.

Eventually, the registry will be incorporated into Jefferson's patient log-in system, where patients can look up data, get test results and pay medical bills--if all goes according to plan. The system will be hospital-wide, but it still has a long way to go, Brumbaugh explained. "I'm guessing we won't have a patient log-in ID for probably another year at least-probably 2 years," she said.

As the registry develops, researchers are also shaping the role the registry coordinator will play. "There's not one job position that's taking care of this," Brumbaugh said. "Little pieces of the project have been delegated to many other people."

Researchers are primarily concerned with data entry at this point, Brumbaugh said, but as the registry builds a coordinator will be hired full-time. The coordinator will need to process new registrants, request medical records, follow up with participants and compile the newsletter. They'll also work with information systems once the patient log-in is up and running.

The decentralized duties posed challenges when the team sought institutional review board approval, but they got the OK. After a year and a half of lobbying for the registry, the project heads were happy to reach their first milestone. "It's a reality now," Dr. Theresa Yeo said.

Coming Up
Next time, ADVANCE will present some of the challenges Dr. Theresa Yeo and Brumbaugh anticipate as the registry grows. We'll also highlight the team's short- and long-term goals.

Cheryl McEvoy is an editorial assistant with ADVANCE.