North Dakota Statewide Cancer Registry named ‘Registry of Distinction’ by CDC
GRAND FORKS, N.D. – Fresh off the recent announcement that it had received more than $400,000 in continuing funding from the U.S. Centers for Disease Control & Prevention (CDC) for its efforts, the UND-based North Dakota Statewide Cancer Registry (NDSCR) has been recognized by CDC as a “Registry of Distinction.”
Without intending to boast, Dr. Cristina Oancea, lead epidemiologist for NDSCR and associate professor in the UND School of Medicine & Health Science (SMHS) Master of Public Health program, noted that such a recognition is nothing new for North Dakota’s only statewide cancer registry.
“This latest recognition reflects our team’s continued excellence in meeting the nation's highest standards for cancer registry performance,” said Oancea, who runs analyses of NDSCR data, noting that NDSCR has been recognized as a “Registry of Distinction” several times over the past decade. “Our goal continues to be the provision of timely, accurate, and comprehensive cancer data that ultimately improves cancer outcomes for the people of North Dakota and beyond.”
Supporting cancer registries like North Dakota’s through the National Program of Cancer Registries, the CDC likewise named NDSCR a “Registry of Excellence” from 2014 through 2019. Even more, NDSCR has earned North American Association of Central Cancer Registries (NAACCR) Gold Standard Certification every year since 2013 in recognition of the exceptional quality, completeness, and timeliness of its data submissions.
Such a collection of awards is a result of the fact that NDSCR staff not only regularly meet CDC deadlines with high-quality data, ensuring accuracy and professionalism, said Oancea, but also present their work at state, national, and international meetings, including local conferences like the Cancer Registrars Association of the Dakotas (CRAD) conference and the North Dakota Department of Health Cancer Data Summit.
Collecting and sharing data
Led by principal investigator Corey Smith, Ph.D., the team labors hard to collect and collate cancer data provided by health facilities across the state. NDSCR works with all hospitals, laboratories, physicians, and healthcare facilities in the state to collect and track every single cancer case diagnosed in North Dakota, including demographic information, diagnoses, first course of treatment, and outcomes.
To date, the Registry stores roughly 150,000 case records in its database, with more than 4,000 new cancer cases being added annually. The latest CDC/NPCR Data Quality Evaluation on NDSCR data gives the Registry an accuracy score of 98.6%.
Because of NDSCR’s high-quality data, said Oancea, providers, state officials, and even individuals ask the Registry for data almost every day. Since 2012, in fact, NDSCR has received more than 300 data requests from hospitals, researchers, students, national organizations, state agencies, and North Dakota residents seeking information regarding potential cancer clusters or applying NDSCR data to their research and publications.
Such requests supplement those from the International Association of Cancer Registries (IACR) and its affiliates. Through the London School of Hygiene & Tropical Medicine’s CONCORD Programme, for example, NDSCR recently joined an international network of more than 300 population-based cancer registries dedicated to monitoring global cancer survival. As a result, North Dakota’s registry contributed data to the landmark CONCORD-4 study published in The Lancet earlier this year. Another CONCORD manuscript featuring NDSCR authors is under review by the same medical journal.
Even more, NDSCR’s high-quality cancer data helped generate a variety of national documents, including the Annual Report to the Nation on the Status of Cancer, United States Cancer Statistics (USCS), Cancer Facts & Figures, Cancer Incidence in Five Continents, and the North Dakota Cancer Control Plan.
“Inclusion of North Dakota data in this landmark publication underscores the international scientific value of NDSCR and demonstrates that its data meet the rigorous standards required for global cancer surveillance,” said Oancea.
The ravage of cancer
All told, cancer kills more than half a million people in the United States annually and costs patients upwards of $20 billion in out-of-pocket costs to diagnose and treat each year. Such statistics are why states have been so aggressive in looking to reduce the cancer burden.
Because cancer was and remains one of the leading causes of death in North Dakota, then, the state’s legislature authorized North Dakota Health and Human Services (HHS) to establish and maintain a statewide population-based cancer registry system in 1997. In 2012, UND became the NDHHS bona fide agent and assumed responsibility for the operation and maintenance of the cancer registry, which is managed primarily by UND's Department of Pathology.
This data, which is carefully collected and kept in the Registry’s secure and confidential database, and administered by IT staff at the state’s only medical school, is used to monitor cancer trends, promote research, guide policy planning, and respond to cancer concerns across the state.
“This monitoring allows researchers and providers to recognize and respond to cancer ‘clusters’ in certain populations and in certain regions,” added Dr. Yun Zeng, NDSCR program director and associate professor in the Department of Pathology. “Our data allows health officials to understand why this or that cancer is appearing with greater frequency in certain communities and explore options for reducing incidence overall.”
North Dakota isn’t alone. According to the National Institutes of Health, cancer is, year-over-year, the second leading cause of death among Americans of all backgrounds and from all regions. As with the rest of the U.S., the most frequent cancers in North Dakota are those of the breast, prostate, and lung.
Through its partnership with UND, added Oancea, NDSCR has become one of the highest-performing population-based cancer registries in the United States. In her capacity as lead epidemiologist, the researcher has played a central role in transforming high-quality registry data into meaningful public health information.
This includes the creation of a variety of cancer maps specific to North Dakota.
One recent map showing the geographic variation in age-adjusted overall cancer incidence across North Dakota counties between 2014 and 2023, for example, provides a visual representation of what one might expect: more cases of cancer in North Dakota counties with larger populations.
“The pattern in this case appears geographically dispersed rather than showing a single, clearly defined high-incidence region,” said Oancea. “The colors represent quartile rankings, meaning they are best interpreted as showing counties’ relative incidence levels within North Dakota, rather than indicating that counties in the darkest quartile necessarily have unusually ‘high’ rates compared with an external benchmark.”
Hoping to be obsolete someday
The good news, added the NIH, is that statistics such as those represented in Oancea’s latest map represent an improvement on cancer incidence relative to a quarter century ago: Cancer death rates actually dropped an amazing 27% from 2001 to 2020.
The bad news is that cancer prevention and treatment have a long way to go, said Zeng, adding that there is a “significant, ongoing shortage of Cancer Registrars” – or Certified Oncology Data Specialists (ODS) – nationally. “The National Cancer Registrars Association and recent studies indicate that over 60% of registry leaders struggle to recruit qualified staff.”
Fortunately, she added, UND has two certified ODS professionals in-house: herself and Dr. Xudong Zhou, assistant professor of pathology at UND and NDSCR quality control manager and education and training coordinator. The pair are both medical doctors trained in tumor histology, coding, grading, cancer staging, and treatment.
And given the fact that new diagnostic tools and understanding about cancer prevention – not to mention epigenetic and AI-assisted therapies – are coming online every day, cancer is getting more treatable.
Such a trajectory means, suggested Zeng, that registries like UND’s might someday become a thing of the past insofar as cancer incidence continues to decline.
Since we’re not there yet, though, the NDSCR team has a lot of work ahead of it. And the researchers are ready for the challenge.
Interim chair of the UND Department of Pathology, Dr. Selly Strauch, agreed.
“It’s important to know that our team received gold status this year because Drs. Zeng, Oancea, and Zhou do such excellent work,” said Strauch. “Their transfer and input of correct cancer data into the Registry with minimal error and accurate reporting is always on time. They’re a credit to North Dakota’s cancer research efforts.”
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Brian James Schill
Director, Office of Communications & Engagement
UND School of Medicine & Health Sciences
701.777.6048 direct | 701.777.4305 office
brian.schill@UND.edu | www.UND.edu