Kay Dosch is a CTR and has worked for the South Dakota Cancer Registry (SDCR) for 14 years. She is the coordinator for the SDCR which is the population-based central cancer registry for the state of South Dakota. In her position, she directs all aspects of the SDCR and is responsible to maintain a high-quality statewide cancer surveillance system. Prior to her current position, she served as the data manager for the SDCR. Recently we had the opportunity to ask her a couple of questions about the South Dakota Cancer Registry:
Kay, When you receive requests for cancer investigations in a community, what is involved in filling that request?
“Cancer clusters that are a public health concern are the ones that represent a group of people who are at unusually high risk of cancer due to some factor or exposure that they have in common. A study of these clusters is sometimes necessary for the prevention of further cancers and to help understand more about specific risks for cancer. Understanding the reasons why the cancer risk is elevated may take months or longer, and the reasons are not always resolved.
The South Dakota Cancer Registry (SDCR) receives requests for assistance when there is a concern of increased cancer incidence or mortality in a community. In response to requests, the SDCR staff uses an established cancer cluster investigation protocol. This guideline ensures that a standardized and coordinated response is used for the investigation. Below is a summary of each of the stages that take place in South Dakota.
The cancer cluster investigation can be divided into four stages: coordination, verification, investigation, and epidemiological study. The first stage, coordination, is when the initial contact is received from the concerned party. The SDCR coordinator arranges for a discussion with the concerned party and explains the process. At that time, documentation is provided to the concerned party with a request to complete the necessary forms which will start the process. After each stage findings are documented and communicated to the concerned party.
During the second stage, verification, the indicated cancer cases and deaths (if applicable) are confirmed. The cancer incidence and mortality rates are calculated and compared. A determination is made if an investigation is warranted. If not, the concerned party is provided the findings and the case is closed. If a full investigation is needed, then stage three begins.
Stage three is the investigation period. During this time, risk factor information is collected and it is determined if the cancer cases and deaths can be explained. The SDCR will obtain local information on any hazards of interest. A determination is made if it is an actual cancer cluster and meets study criteria. If not, the concerned party is provided the findings and the case is closed. If the study criteria is met, then stage four begins.
The epidemiological study is the fourth stage. Further investigation may involve a case-control, cohort, or cross-sectional study. During an epidemiological study, the SDCR requests assistance from appropriate federal agencies. The agencies involved may include the centers for Disease Control and Prevention (CDC), the Agency for Toxic Substances and Disease Registry (ATSDR), and /or the Environmental Protection Agency (EPA). The SDCR works with the appropriate agency for possible resolution and findings are communicated to the concerned party. It is important to understand that the epidemiological study takes time and that the reasons for the increased cancer incidence are not always fully understood.”
What are the challenges of maintaining NAACCR Certification from year to year?
“The SDCR has been certified by the North American Association of Central Cancer Registries (NAACCR) for ten consecutive years. The certification is based on the quality, completeness, and timeliness of the data submitted to NAACCR in the annual call for data. For South Dakota, the area that poses the greatest challenge to maintaining that certification is to have the software tools in place to process the data in a timely manner. The cancer reporting standards are continually being modified which requires upgrades to the software. The challenge stems from issues when the upgraded software release is delayed and/or the software has functionality issues within the state IT system.”