Cancer registries are an integral part of anti-cancer efforts, as they assist physicians in formulating treatment plans, researchers in creating abstracts, and academics in educating the public about cancer causes, treatment, and prevention methods.
If you are struggling with cancer, your information may be added to a registry to assist in controlling and preventing cancer. While it is entirely natural to worry about what sort of personal information is recorded, none of it is identifying and the information is solely used to aide in creating accurate, timely statistics related to cancer.
Demographic information collected by a cancer registry includes your age, gender, race and ethnicity, place of birth, and place of residence. This information is helpful for tracking cancer statistics across age, differences in prevalence between males and females, prevalence in different races, and cancer rates in different cities.
Your medical history information will include physical findings, screening information, your occupation, and any history you or a family member may have of cancer previously. Medical history is one of the most important elements in cancer registry data, and is highly effective in helping registrars identify and analyze patterns between patients. For example, mesothelioma has been linked specifically to patients who previously worked around asbestos through work performed by cancer registries.
Diagnostic findings collected include information relative to how you were diagnosed. This includes the type of cancer you have been diagnosed with, the date of your diagnosis, and the results of the procedures that were used to diagnose your cancer. This information helps registrars analyze the prevalence of specific cancer types and pinpoint the best procedures for diagnosing each type specifically.
Information directly related to your cancer will be collected, including the primary site, cell type, and extent of the disease. This is useful for identifying common primary sites for each type of cancer and when combined with information about the date of diagnosis, analyzing the pace at which each type of cancer progresses.
Regardless of the treatment(s) you undergo for your cancer, data will be collected for the registry, such as surgery, chemotherapy, radiation therapy, hormone therapy, and immunotherapy. Information about cancer therapy helps registrars identify how effective different treatments are for different types of cancer.
As you continue through your cancer treatment into remission, registries still collect data about your progress. This includes updates to your status, updates to your treatment plan, and recurrence, if applicable.