Q: What is cancer?
Answer: When we use the word “cancer” we are talking about a group of more than 100 different diseases characterized by uncontrolled growth and spread of abnormal cells. If the spread is not controlled it can result in death.
Q: What is a cancer registry?
Answer: A cancer registry is a cancer information center. Registries collect information about new cases, new treatment and cancer deaths.
There are three general types of cancer registries:
- Hospital-based registries collect information about cancer patients at that hospital
- Specialty registries collect information on one type of cancer, such as brain cancer
- Central cancer registries collect information about cancer patients in a particular geographical area, such as the state of Arkansas
Q: What is the Arkansas Central Cancer Registry?
Answer: The Arkansas Central Cancer Registry (ACCR) is a population-based registry that collects information on cancer cases. Health care facilities throughout the state report information to us about cancer cases that are diagnosed and/or treated. In 1989 the Arkansas Legislature passed a law (20-15-202) mandating the collection of these data. Under this law, each hospital or medical facility providing screening, diagnostic or therapeutic services, physicians, including surgeons and all other health care practitioners or their designees shall report information concerning each cancer case.
Q: What is epidemiology?
Answer: It is the branch of medicine that deals with the study of the causes, distribution and control of disease in populations. An epidemiologist is the person responsible for the study and evaluation of chronic diseases and environmental health problems.
Q:What years of data can the ACCR provide?
Answer: The ACCR collects and maintains a database of cancer cases diagnosed on or after January 1, 1996. Data diagnosed in 1996 is limited because only facilities with over 100 beds were required to report the data. Beginning with cases diagnosed in 1997 all facilities were required to report their data.
Q: What information is reported to ACCR?
Answer: Information about newly diagnosed in situ and invasive neoplasm’s of the human body, not including squamous and basal cell carcinoma of the skin and in situ of the cervix. Also patient demographics (patient name, address, age, race, and sex) and treatment information (surgery, radiation and chemotherapy).
Q: Why does the ACCR need patient identifying information?
Answer: The value of the registry depends on having accurate, individually identifiable information. Identifiers are important because cancer patients are seen in more than one health care facility which means that duplicate reports are submitted to the ACCR. Without patient identifiers the ACCR would not be able to consolidate duplicate reports. If we were unable to consolidate records Arkansas would appear to have a much higher rate of cancer than it actually has.
Q: Who reports the information?
Answer: Any health care facility or provider who diagnoses or treats cancer cases. This includes hospitals, pathology laboratories, freestanding cancer treatment centers, radiation therapy centers, chemotherapy treatment centers, ambulatory surgical treatment centers, oncology and dermatology, nursing homes, hospices. Data collection (abstracting) must be performed by trained personnel. Certified Tumor Registrars (CTRs), abstract most of the cancer cases in the state. Other data collection personnel are trained by ACCR staff or through other recognized training programs. The registrars send this abstracted information to the ACCR where it is checked for quality and entered into the state database.
Q: How is the information used?
Answer: The ACCR uses this information to keep citizens, health care providers, researchers, health care and policy makers informed about the incidence of cancer in Arkansas.
- To estimate incidence of cancer within Arkansas by age, sex and race.
- For referral when there is an internal or external request for information.
- For the investigation of potential cancer clusters.
- To show the areas of the state where interventions should be implemented.
- To map late and early stages of certain cancer sites.
- To reveal the areas of the state where there is limited case reporting so audits can be performed by the ACCR QA specialists.
- To monitor current cancer control efforts.
- To assist in evaluation of the effectiveness of current cancer control programs.
Q: What about Patient confidentiality?
Answer: Arkansas preserves the confidentiality of the data reported to ACCR. ACCR staff is aware that behind the data we use every day are real people. Patient and institutional confidentiality must be maintained when mailing, faxing or discussing cases over the telephone. In 1996 the U.S Congress passed a law requiring uniform federal privacy protection for individually identifiable health information. This law is called the Health Insurance Portability and Accountability Act, or “HIPAA”. Reporting information about cases of cancer in accordance with the Arkansas Law is permitted by HIPAA. The ACCR is considered a public health authority, and as such, is authorized to obtain protected health information without patient consent. For additional information on confidentiality please visit our Laws and Regulations page or the topic on the About Us page.
Q: What type of information does ACCR provide to professionals and the general public?
Answer: The ACCR accumulates data concerning cancer in Arkansas and its residents as is deemed appropriate for the purposes of describing the frequency of cancer and furnishing reports to health professionals and the public for planning and evaluating cancer prevention and control programs. Information accumulated and maintained in the ACCR shall not be divulged except as: (1) statistical information which does not identify individuals and (2) retrieval of data to be used for research approved by the Arkansas Sate Board of Health.
Q: Is there public access to this information?
Answer: Yes, please visit our online query system or go to our Data Requests/Analysis page.