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Illinois State Cancer Registry

The Illinois State Cancer Registry (ISCR) is the only population-based source for cancer incidence information in Illinois. Cancer cases are collected through mandated reporting by hospitals, ambulatory surgical treatment centers, non-hospital affiliated radiation therapy treatment centers, independent pathology labs, dermatologists and through the voluntary exchange of cancer patient data with other (mostly nearby) states.

In June 2022, ISCR received Gold standard – the highest standard for registry certification - from the North American Association of Central Cancer Registries for the 1995-2019 data that were submitted in November 2021. The North American Association of Central Cancer Registries annually reviews all state cancer registries in North America for their performance in collecting complete, accurate, and timely cancer data. Only those registries meeting the highest standards are awarded Gold certification. ISCR has received Gold certification for 24 consecutive years.

To be awarded this honor, a registry must have 95 percent or better completeness of case ascertainment; 98 percent validity of information recorded for selected data variables (age, sex, race and state/county); death-certificate only cases less than 3 percent; duplicate primary cases fewer than one per 1,000; 100 percent of the records passing the NAACCR EDITS without error; and data submissions with 23 months of the close of the accession year.

Medical facilities are mandated to report cancer cases within six months of the date of diagnosis or within four months after the date of discharge from the reporting facility, whichever is sooner [77 Ill. Admin. Code 840.110(c)]. National cancer registry standards anticipate and allow a standard delay of 23 months between the end of the diagnosis year and the time the cancer data are submitted for certification each November. This delay is, in part, due to the time required for completion of cancer treatment for the patient, time for the hospital or treatment facility to record and submit the case to the central cancer registry, and time required for case ascertainment, quality control and assurance procedures, and preparation of reports at the central cancer registry. For example, cancer cases diagnosed in 2019 were submitted for certification in November 2021 and released to the public in June 2022. In each release, updated data from previous years are included as either new cases are reported from previous years or new information is received about a previously reported cancer case.

The Illinois State Cancer Registry is funded in whole or in part with federal funds from the National Cancer Institute, National Institutes of Health, U.S. Department of Health and Human Services, under Contract No. 75N91021D00006, the National Program of Cancer Registries, Centers for Disease Control and Prevention under cooperative agreement 1NU58DP007162-01-00, and the state of Illinois. The findings and conclusions are those of the Illinois State Cancer Registry and do not necessarily represent the official position of the Centers for Disease Control and Prevention or the National Cancer Institute.

To query Cancer Incidence Data or to query Cancer Mortality Data, see Resources.

Concerns about Cancer Clusters

Concerns about the incidence of cancer in a community are not uncommon. Unfortunately, cancer is a common disease, sometimes more common than many people believe. At the present time the National Cancer Institute estimates that in the United States, one in two men have a lifetime risk of developing cancer. For women, the lifetime risk is one in three. The number of people with cancer is increasing in most communities because more and more people are living to an age of greatest cancer occurrence. It would not be unusual to find numerous cases of cancer in one small area, even more than one cancer in the same household.

It is a common perception that cancer is a single disease. In fact, cancer is many different diseases, each with differing rates of occurrence, risks, causes, and chances of survival. Additionally, there is a latency period (time from exposure to disease) of 10-20 years for most adult cancers. The majority of cancers are related to lifestyle factors such as smoking, alcohol use, diet, obesity and lack of physical activity.

As defined by the National Cancer Institute, a cancer cluster most likely involves a large number of cases of the same type of cancer, rather than several different types; a rare kind of cancer, rather than common types; or a number of a certain type of cancer cases in age groups not usually affected by that type of cancer. These situations are likely to indicate a common source or mechanism of carcinogenesis (the process by which cancer develops). The occurrence of several types of cancer in a group of people or a geographic area generally does not constitute a cancer cluster.

There is no study the Department can do that will show what caused cancer among residents in a community. No one study is likely to prove that a particular exposure definitely causes a particular disease and no single study, nor even a large number of epidemiological studies will enable a person to know why he or she developed cancer.

Fortunately, many types of cancer can be prevented, and the prospects for surviving cancer are better than ever before and continue to improve. Early detection and improved treatments are allowing more people who have been diagnosed with cancer to live longer and better. By adopting a healthier lifestyle and visiting a physician regularly for a cancer-related checkup, many people could reduce their chances of developing or dying from cancer.