The fight against cancer

Ten months after receiving a five-year, $1.65 million grant to operate the North Dakota Statewide Cancer Registry from the University of North Dakota, Mary Sens, NDSCR's principal investigator, is pushing for more community involvement with the p...

Mary Sens with Yun Zhen
Mary Sens, left, and Yun Zheng are among the North Dakota Statewide Cancer Registry staff of experienced cancer researchers. John Brose, special to the Herald.

Ten months after receiving a five-year, $1.65 million grant to operate the North Dakota Statewide Cancer Registry from the University of North Dakota, Mary Sens, NDSCR's principal investigator, is pushing for more community involvement with the program.

The grant was written by Sens, chair of pathology at the North Dakota School of Medicine and Health Sciences, and approved by the Center for Disease Control and Prevention in July 2012. CDC oversees operations for all state cancer registries, as mandated by the federal government. The North Dakota Department of Health ran NDSCR from its establishment in 1997 until 2012, when UND took over.

"A cancer registry is basically a very large database, so that every cancer report all over the country gets put into this database," Sens says. According to Sens, when an individual is diagnosed with a form of cancer, federal mandates include reporting the diagnosis to the state cancer registry. NDSCR records the type of cancer, the severity and the initial treatment.

The state cancer registry stores the report so government institutions such as the CDC and nonprofit institutions such as the American Cancer Society can better study all types of the disease and treatments.

The records kept in NDSCR's database are carefully coded, confidential and "triple-password protected," Sens says. Records about a patient's treatment are the most valuable in terms of research.


"That information is also whether they responded to a drug, they responded to surgery, if the cancer came back, where did it come back, did another type of cancer develop ... all that information helps the country to really plan for cancer care," Sens says. NDSCR collects information on cancer patients from primary care facilities such as Altru, but state cancer registries are not involved in the process of patient treatment.

"We're actually hoping to make this very interactive with our patients," Sens says. "We'd like to have patients learn more about the registry, we'd like to form focus groups and community groups so we can find out what North Dakota wants from this registry and see if there's ways to provide that to the people here. That's a project for next year and ongoing."

Monitoring trends and factors

From reported cancer trends, the CDC can also follow factors that might relate to cancer diagnoses. In 2006, NDSCR's ability to monitor trends in cancer diagnoses within a particular region was critical during what Sens refers to as a "cancer scare" in western North Dakota.

"The health department got reports that some of the gravel in western North Dakota had a mineral in it called erionite. In other parts of the world, it's been linked to an increase in mesothelioma. So, there were people looking into it to see if we had a large increase in cancer or not," Sens says.

The NDDH then performed a geological survey in Dunn County, N.D., to determine if erionite was present within the area's gravel deposits.

"The concern is that it's an asbestos-like fiber, but in some cases, it can be more toxic than asbestos," says Dave Glatt, chief of Environmental Health with NDDH. "We looked at if there was an increased level of lung diseases often caused by asbestos or erionite."

The NDDH and the CDC utilized the records kept by the NDSCR to determine if there was an increase in cancer diagnoses in the region.


"I was involved initially with some of the studies, but it wasn't as big of a crisis as it potentially could've been and we're not sure if there's anything to it or not, but we get that through data and not through scare tactics," Sens says. "That's what's important."

"There was a small percentage of people found with lung abnormalities," Glatt says.

"There's also been a lot of inquiries about cancer clusters," Sens says, referring to regions with a high volume of the same cancer diagnoses. "Fortunately, we haven't had one here in North Dakota, but in other areas where these are noted, sometimes it can be traced back to an environmental hazard."

Outside of NDSCR's community involvement initiative and diligent daily efforts, it has no major projects or cancer studies planned.

"Everybody knows somebody who's had cancer; it's a scary disease and yet, we can do something about it. So we're going to try to get better-designed websites so people can find out about cancer, get referrals for cancer, and really use the registry data to best serve North Dakota," Sens says.

Xudong Zhou
Xudong Zhou, a cancer researcher, studies a slide at UND's cancer registry.

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