NPCR’s 30th Anniversary
Thirty years ago, Congress supported a vision of having more accurate and complete cancer data when they passed the Cancer Registries Amendment Act that created CDC’s National Program of Cancer Registries (NPCR).
We at CDC are celebrating NPCR’s accomplishments over 30 years and planning for exciting things to come under our data modernization initiative.
To prevent and control cancer, we need timely and accurate data to measure progress and drive action. NPCR funds infrastructure and technical support to collect high-quality data on cancer occurrence, initial treatment, and outcomes.
Before NPCR was established, 10 states had no registry, and most states with registries lacked the resources and legislative support they needed to gather complete data. Today, through NPCR, CDC supports central cancer registries in 46 states, the District of Columbia, Puerto Rico, the US-Affiliated Pacific Islands, and the US Virgin Islands. The data cover 97% of the US population.
Together, CDC’s NPCR and the National Cancer Institute’s (NCI’s) Surveillance, Epidemiology, and End Results (SEER) Program collect data for the entire US population. This information allows researchers, clinicians, policy makers, public health professionals, and members of the public to—
- Learn which groups of people are most affected by cancer.
- Develop resources to reach communities with higher cancer rates.
- Find out how well cancer prevention programs work.
- Set priorities for allocating health resources.
- Advance clinical, epidemiologic, and health services research.
Thirty years ago, I was proud to sponsor and help shepherd the passage of the Cancer Registries Amendment Act, the landmark legislation establishing the National Program of Cancer Registries (NPCR).
We all know someone who has been diagnosed with cancer and many of us have lost a family member or dear friend to this terrible disease. My wife, Marcelle, is a cancer survivor. I recognize the intense struggles that patients and their loved ones face when coping with this debilitating disease. Together, Marcelle and I are committed to conquering cancer through research and data collection and we are heartened by our nation’s renewed commitment to the fight against cancer.
President Biden’s Cancer Moonshot has set a goal of cutting the death rate from cancer by 50 percent over the next 25 years. I believe that with the administration’s determination and Congressional support, this goal is both imperative and achievable. Over the past 30 years, NPCR has made significant progress, and I commend the researchers, support staff, and cancer patients who are all working to end cancer.
Millions of Stories Become One Report
When a person first hears the words, “The results are back, and it’s cancer,” it can change their life forever. It also starts a process to document the diagnosis. Here’s how it works—
- Medical facilities, pathologists, doctors, and other reporters collect information about the cancer, such as its type and location, the initial treatment, and how well the treatment worked.
- They send this information to central cancer registries. Specially trained people at the registries check to make sure the information is right. The registries remove information that could identify patients individually and send the rest of the information to CDC or NCI.
- Each year, NPCR registries collect data for about 2 million new cancer cases. CDC and NCI report their combined national data in the US Cancer Statistics. All data are available in the US Cancer Statistics Data Visualizations tool and public use databases.
Each cancer data point represents a tumor that has affected a person. Their stories—shown in our data—help us to understand how we can help reduce the number of people who get cancer and die from it.
What’s Next? Data Modernization
The need for timely, accurate cancer data is greater than ever. While we have data on every cancer case that can be reported in the United States, we need to improve our systems so we can collect data faster at every step. Real-time data would provide a current, more complete picture of cancer trends at all levels, from local to national. This would also help public health professionals make decisions faster to save lives.
To accomplish this goal, CDC is working with central cancer registries to move toward a cloud-based computing platform and to use electronic reporting from laboratories and electronic health records. We’re starting to build and test the cloud-based platform now.
Registry expert Reda Wilson explains how registries help make sure families won’t have to say goodbye because of cancer.
Dr. Loria Pollack explains the importance of cancer registry data to understanding how cancer affects the United States.