As the North American Association of Cancer Registries (NAACP) meets this week in Saint Louis, it is important to reflect on the work happening to fight one of the most heart-wrenching diseases plaguing our nation. Here at SSG, we are working on ways to improve Cancer Registries through our knowledge of data abstraction, validation, and distribution.
What is a Cancer Registry?
Hospitals and acute care facilities collect data from cancer patients, and record the information into a database known as a Cancer Registry. These facilities report their collected data to their state or regional registry. Upon completion, states present their findings to the public for further analysis and research. The Center for Disease Control (CDC) and the National Cancer Institute (NCI) provide oversight, analyze national data, and offer grants for further research and development.
This reporting process was instituted as a result of the National Registries Amendment Act mandated by Congress in 1992, which produced the National Program of Cancer Registries (NPCR). The NPCR set out to create a national registry of records to store information pertaining to cancer patients’ data, diagnoses, tumors, and treatments across the US.
Why Are Cancer Registries Important?
In 2013 the NCI reported that over 4 million people were living with cancer in the US, and nearly 125 billion dollars had been spent on cancer related costs.
Alarming as these statistics are, they do not compare to the bravery shown by cancer patients, the resilience of survivors, the dedication shown by health care providers, or the anguish felt by the loved ones of someone with cancer. While no two cancer patients are the same, access to applicable information is critical to not only the survival of those with cancer diagnoses, but in the fight to eliminate cancer from the global population.
To best fight cancer, it is important to have a dedicated community involved in the fight. We know this is true at SSG, and we’re working to provide our top-notch software development, data abstraction, validation and distribution services to help strengthen the collective cancer-fighting forces. Our expertise can make a difference in the lives of those with cancer, and our team is working diligently to provide the capabilities needed to maintain and upgrade Cancer Registries. Our hope is that the information found in Cancer registries will someday help provide a cure.
What Information Can We Learn from a Cancer Registry?
There is much that we can learn from analyzing data from Cancer Registries. This information tells our health care providers the exact nature of a patient’s disease, allows for analysis of any trends, and provides data for statistical analysis. Tracking this data over time can help providers understand what treatments are proving effective, and when additional research would be beneficial. Registry data analysis leads to improved patient care, education, and research methods. For example, the State of California does an excellent job of providing the public with user-friendly data. Please feel free to check out their Cancer Rates website. California’s reporting website is made possible by the diligent reporting work of their Cancer Registry.
Why are there many software programs for Cancer Registries?
As with any software application or technology device, it needs frequent updates to keep current with the latest technology improvements. These updates ensure ease-of-use, duplicate data detection, security enhancements, and reporting features that improve use of the collected data. Since the creation of the NPCR, the industry has produced numerous updates and systems to maintain cancer related data. These different platforms in turn offer different software programs that provide for customization and reporting features. Cancer Registries chose their systems by determining specific reporting needs and procedures.
Cancer Registry Software Programs
•Rocky Mountain Cancer Data Systems —The first registry in the US. It continues to provide support to different state and hospital registries.
•“Home-grown” Systems—Some registries have created “home-grown” reporting and software systems to provide the required documentation to the CDC and NCI.
•SEER-CDS — NCI’s Surveillance, Epidemiology, and End Results Program that specializes in web-based tools and reporting features.
•Registry Plus — The CDC’s collection of free software programs used to collect and process registry data.
How Does the SSG Team Help Cancer Registries?
At SSG we excel at providing Migration Support, Operational Support, and Maintenance to local Cancer Registries. Our project team is also knowledgeable in the latest technologies, project management processes, and software development systems. We are proficient in providing the technical abilities needed to enhance, comply, and review reporting systems.
Therefore, along with our Partners, we are using our technological abilities to ensure that Cancer Registry projects obtain specified goals. Please visit our services page here to learn more about our capabilities.
To Learn More
Finally, there is certainly more to learn about Cancer Registries and how they work. For more information please consider visiting the following organizations below:
National Cancer Institute: http://seer.cancer.gov/statfacts/html/all.html
Center for Disease Control: http://www.cdc.gov/cancer/npcr/tools/registryplus/index.htm
National Cancer Registrar’s Association: http://www.ncra-usa.org/i4a/pages/index.cfm?pageid=1
North American Association of Central Cancer Registries: http://www.naaccr.org/