Having a loved one with cancer can be emotional and frightening.
However, it may be comforting to know that data about every cancer patient in the United States is being gathered into cancer registries through a mandate from the federal government. The hospital, state and national registries are aimed at furthering medical research on cancer.
“The data is anonymously collected for analysis and research,” says researcher Shirley Jordan Seay, PhD, president of the National Cancer Registrars Association and a consultant for the Commission on Cancer (COC). “That’s how we create cancer statistics, how we know what treatments work better and how we can then create standards of care for all patients.”
How a Cancer Registry Works
Most hospitals have a cancer registry, or outsource their data collection to other organizations to identify information. Names and Social Security numbers are stripped from the data before it is sent to the mandated state or central registry, says Seay.
The state cancer registry then reports the statistics to the Centers for Disease Control and Prevention (CDC) or the National Cancer Institute. For more about what the National Cancer Registry is, what it’s used for and the role of registrars, go to the National Cancer Registrars Association website (http://www.ncra-usa.org).
The CDC also offers information about cancer registries, including a section explaining their unique value to cancer patients at http://www.cdc.gov/cancer/npcr/value/.
Benefits of a Cancer Registry
Everyone involved needs to know that registries exist, and that anonymous data is collected on every patient. This means that it’s important for you to keep track of data even after cancer treatments end.
Including your loved one (or yourself) in a cancer registry may not be at the top of your to-do list when you’re caring for someone with cancer, but it’s worth keeping in mind. The data in these registries could help your relative now, and other cancer patients in the future.
- Keep records. Make sure that, when your loved one’s treatment is completed, you ask for a full record of the treatment, says researcher Shirley Jordan Seay, PhD, president of the National Cancer Registrars Association and a consultant for the Commission on Cancer (COC). “It’s very important, for continuing care over her lifetime, to know which treatments she’s had.” Having that information makes it easier for you to continue to update her doctor and a hospital registry about your loved one’s health.
- Sign up for a patient-friendly cancer registry. “It’s a way to see how other people are answering the same questions you are about things like pain, sleep and finances,” says Joanne Buzaglo, PhD, VP of research and training for the Cancer Support Community, a non-profit for those affected by cancer.
- Recognize your unique needs. In addition to federally mandated registries, other registries are forming in which patients participate directly, says researcher Joanne Buzaglo, PhD, VP of research and training for the Cancer Support Community. The Cancer Support Community also inputs data about the emotional experience of cancer. “We are tracking the unique needs of cancer patients by diagnosis, where to put research efforts and how to change ways that cancer care is delivered,” says Buzaglo.
To find out about patient-centered registries in your area, check with local or regional advocacy organizations related to a particular cancer in a very specific town or locale, such as the Breast Cancer Registry of Greater Cincinnati.
Find a caregiving registry in your town. To sign up for the Cancer Support Community Cancer Experience Registry, go to cancerexperienceregistry.org and ask to be notified when the registry launches.
Registries track patients from diagnosis to the end of their lives, so your hospital needs to know if a cancer occurs again or if your loved one has been disease-free for a long time,” says researcher Shirley Jordan Seay, PhD, president of the National Cancer Registrars Association and a consultant for the Commission on Cancer (COC).