Health: CDPC: Cancer Surveillance and Data

Overview

The Indiana State Cancer Registry was established in 1986 due to a law mandating that beginning in January of 1987 all reportable cancers must be reported to the Indiana State Cancer Registry. This means that since 1987 the Indiana State Cancer Registry has collected every single case of reportable cancer from a variety of hospitals, clinics, labs, and other entities. This database is extensive with data that covers the patient from first diagnosis of cancer through death. Information on patient demographics, diagnosis data, and treatment information is collected. The cancer registry staff at IDOH work to collect this data and ensure quality control of the data.

The IDOH Cancer section analyzes all available cancer data including the data available through the Indiana State Cancer Registry. Some of this analysis can be found in the IDOH Fact Sheets and is available through request.

Cancer Statistics/Data Requests

Cancer statistics and data are available to the public upon request from the cancer epidemiologist. Statistics include data on cancer incidence, mortality, screening, survivorship, disparities, etc. and can be broken down by factors such as type of cancer, sex, race, ethnicity, age, etc.
To request cancer data and statistics, contact Taylor Eisele at TEisele@health.in.gov or (317) 234-5122.
Cancer Research Requests
Indiana, like many other states, is not an open records state. All medical and epidemiological information, vital records, cancer registry, hospital discharge, and communicable disease information is considered confidential and is protected by statute.
Certain data may be made available to qualified researchers upon application to, and a favorable decision by, the Agency’s Data Release Committee (DRC). In order to protect the confidentiality of persons in the data base and to prevent misuse of our health data, the Indiana Department of Health has certain requirements that need to be met before we can release data. The specific requirements depend on the type of information you are requesting. For example, cancer data are highly protected by law, whereas marriage records are less protected. Once we have all of the required documents and information, the DRC will consider your request.
At a minimum, these documents and information are required:
- A written request (on letterhead if representing an organization)
- A description of your research proposal or intended use of the data
- Variables required for your study
- Year(s) of data requested
- Date by which data set or summaries are needed
- IRB approval
- Completed and signed confidentiality agreement
- Means of maintaining confidentiality, including who will have access to the data, how the data will be stored, other persons or organizations that will have access to the data, anticipated publication or dissemination of raw data or data analyses, and how the data will be destroyed at the termination of the project.
- If you are a graduate student, your major professor must sign all submitted documents as well and will be ultimately responsible for the appropriate use and protection of the data.
For additional information, please contact Taylor Eisele at TEisele@health.in.gov or (317) 234-5122.

Cancer Clusters

The complex nature of cancer makes it difficult to identify, interpret and address cancer clusters. Cancer is a term used to describe more than 100 different diseases that share a similar characteristic: uncontrollable growth and division of the body’s cells. Each type of cancer has its own risk factors and causes. This is why true cancer clusters very rarely involve more than one type of cancer. In most cases, identified cancer clusters must have one of the following characteristics:

There are several cases of a rare type of cancer.
There are greater-than-expected numbers of a more common type of cancer.
It is a type of cancer that is not usually seen in a certain group of people (e.g. children getting cancer usually seen in adults).

Confirmation of cancer cluster does not mean that there is a known cause or hazard. A confirmed cancer cluster could be the result of chance (random events with no known cause), miscalculation of the expected number of cases, differences in the case definition between observed cases (actual number of cases) and expected cases (the rate that cancer normally occurs), known causes of cancer (e.g. high smoking rates), and unknown cause(s) of cancer. Follow-up investigations can be done but can take years to complete, and the results are typically inconclusive (i.e., usually no cause is found).

IDOH takes every report of a suspected cancer cluster seriously. And, while the steps are similar, each investigation is slightly different, based on the type of cancer, number of cases involved and other factors.

How to report a suspected cancer cluster
The Indiana Department of Health (IDOH) takes every report of a suspected cancer cluster seriously. While most suspected cancer concerns do not result in in true cancer clusters, each reported cancer inquiry is assessed and investigated through a systemic process as outlined by Guidelines for Examining Unusual Patterns of Cancer and Environmental Concerns.
Examples of cancer cluster concerns from the public may include:
- There seems to be many people diagnosed with cancer in my neighborhood. Is this a cancer cluster?
- I (or my friend, coworker, or family member) was diagnosed with cancer, and I am worried that something in my community or workplace may have caused it.
- I am worried that chemicals from an industrial site, facility, or business in my neighborhood might be causing cancer.
To report a suspected cancer cluster, please DO take the following steps:
1. Contact IDOH:
  - Email cancer@health.in.gov
2. Provide known information. Please be prepared to provide your personal information (name, address, contact information, etc). In addition, you will be asked questions regarding the specific cancer of concern and/or environmental concern(s). All information gathered is kept confidential and will only be used for the purposes of the cancer inquiry.
3. Maintain communication. The IDOH investigation process includes open communication with citizens who initiate the cancer inquiry process to keep everyone informed and to gather additional information as needed.
Please DO NOT:
1. Gather personal health information from others unprompted.
2. Share someone’s personal health information without permission.

Frequently Asked Questions

What causes cancer?

The term “cancer” refers to a group of more than 100 diseases that share some basic characteristics. Different types of cancer usually have different causes or risk facts. Although scientists have made progress in understanding and treating cancer, there is still a lot that is not known about what causes cancer, and why some people get cancer and others do not. The newest research shows that causes of cancer may have to do with the complex relationship between a person’s genetics, lifestyle, and exposures.
Carcinogens are chemicals that cause cancer. Exposure to these chemicals at work, in neighborhoods, or within communities only accounts for a relatively small percentage of cancer deaths. According to the American Cancer Society (ACS), an estimated 4% of cancer deaths are related to occupational exposures and 2% from carcinogens in the environment.
Lifestyle factors are habits that can increase cancer risk such as smoking, being overweight, and not getting enough exercise. According to the American Cancer Society smoking causes about 20% of all cancers and about 30% of all cancer deaths in the United States. The World Cancer Research Fund estimates that at least 18% of all cancers diagnosed in the United States are related to obesity, physical inactivity, alcohol consumption, and/or poor nutrition and thus could be prevented. Similarly human papillomavirus (HPV), a vaccine preventable disease, causes an estimated 37,000 cases of cancer in the United States each year.
Age is the most important risk factor for developing cancer. About 87% of all cancers in the United States are diagnosed among people aged 50 years or older.Therefore, a community of older adults is expected to have more cancer cases than a community of younger people, or a community with a range of age groups.
What is a cancer cluster?

A cancer cluster is defined by the CDC, the National Cancer Institute, and other public health institutions as “a greater than expected number of cancer cases that occurs within a group of people in a geographic area over a defined period of time.”
Cancers diagnosed today are usually related to events that happened many years ago. Although childhood cancers are an obvious exception, people may develop cancer a long time after being exposed to a cancer-causing agent. This “latency period” can be years or even decades. This makes identifying when a person might have been exposed to a particular carcinogen very difficult. The cancer may have been caused by something that happened somewhere else, a long time ago. For adult cancers, unless people have remained in the same geographic area or type of work for many, many years, cancers caused by something in the place where they now live, and work is unlikely.
How commonly are cancer clusters reported, and how often do they occur?

State and local health agencies receive approximately 1,000 inquiries per year regarding suspected cancer clusters. Most reported situations do not fit the scientific definition of a cancer cluster. In a small number of situations (5-15%), formal testing confirms that the number of cases of a specific cancer in a community exceeds the expected number. However, in most of these cases, science is unable to identify any specific hazards causing cancer.
Cancer clusters can occur by chance. For some cancer types, and some geographic areas, a small number of cases may be enough to change an area’s cancer rate from below average to above average. These increases may be real; however, these additional cases may simply be the result of variations that occur randomly or by chance, and not due to a single cause.
What is Trevor’s Law and what does it have to do with cancer clusters?

On June 22, 2016, Trevor’s Law was enacted. The federal law addresses the investigation of potential cancer clusters by requiring the Secretary of the United States Department of Health and Human Services (HHS) to develop criteria for the designation of cancer clusters, as well as develop, publish, and periodically update guidelines for the investigation of potential cancer clusters. In addition, the law requires that HHS provide assistance to state and local health departments. The Indiana Department of Health’s current guidelines for responding to inquiries related to suspected cancer clusters align with the 2022 guidelines from the CDC and CSTE. These guidelines were originally published in 2013 and have recently been updated in accordance with Trevor’s Law and to expand the scope of the document to include examining unusual patterns of cancer and environmental concerns. The Indiana Department of Health continues to monitor for new guidance or changes in resources provided by federal partners.

Contact

Taylor Eisele
Cancer Epidemiologist
teisele@health.in.gov
(317) 234-5122

Tim Arndt
Program Director
tarndt@health.in.gov
(317) 234-2887

Alex Kiess
Partnership and Communications Director
akiess@health.in.gov
(317) 234-3326