Florida Cancer Registry

Each facility and laboratory licensed under Chapters 395 and 483, and Section 408.07(20), Florida Statutes, and practitioners licensed under Chapters 458, 459, 464, F.S., must report to the Florida Department of Health, through the Florida Cancer Data System, such cancer incidence information as specified by Rule 64D-3.034, Florida Administrative Code.

INFORMATION to BE REPORTED

Reporting Policy: Health care facilities and practitioners are required to report cancer cases at least quarterly. For larger facilities, FCDS encourages monthly reporting. As mandated by section 385.202 F.S., all cancer cases must be reported no later than 6 months after the diagnosis.

Florida statute requires all malignant cancers reportable with the following exceptions:

• In situ carcinoma of the cervix (CIS), intraepithelial neoplasia grade III of the cervix (CIN III) and intraepithelial neoplasia of the prostate (PIN III) are not reportable.
• Basal and squamous cell carcinoma of non-genital skin sites are not reportable regardless of extent of disease at the time of diagnosis or the date of first contact with the reporting facility.

Reportable on or after diagnosis date of 01/01/2001 are Intraepithelial neoplasia Grade III of vulva (VIN III), vagina (VAIN III), anus (AIN III), and Myelodysplastic Syndrome (MDS).

Reportable on or after diagnosis date 01/01/2004 are brain-related tumors. The term “brain-related tumor” means a primary tumor (whether malignant or benign) occurring in the brain, meninges, spinal cord, cauda equina, a cranial nerve or nerves, or any other part of the central nervous system; and the pituitary gland, pineal gland, or craniopharyngeal duct.

DATA PROCESS PROCEDURES AND QUALITY ASSURANCE

The Florida Cancer Data System presently collects new cancer cases from 248 hospitals, 246 freestanding ambulatory surgical centers, 100 radiation therapy centers, 500 pathology laboratories, and a number of specialty physician offices (e.g. dermatologists, oncologists, urologists, etc.) throughout the state.

Reporting facilities and practitioners are to submit case abstracts electronically through the system’s IDEA (Internet Data Abstracting Entry module). Once cancer cases are received by the Florida Cancer Data System, these cases are checked for accuracy and completeness regarding the cancer patient’s demographics (e.g. full name, age, sex, race/ethnicity, marital status, address, occupation, etc.) and tumor information (e.g. the date of diagnosis, the method of diagnosis, stage, initial treatment, etc.) by performing inter-and-intra edits in agreement with the North American Association of Central Cancer Registries (NAACCR) standards.

All cancer records that have passed “checks and edits” are added to the master file and made available for health education, health intervention, and research purposes.

The Florida Cancer Data System conducts annually a case completeness and data quality audit to assess case completeness and the level of data quality of the cancer abstracts submitted by reporting facilities and practitioners throughout the state. Complete and accurate data are necessary to estimate variations in population subgroups, and changes among population sub-groups over time.

Case Completeness and Data Quality Audit

• Selection of a random sample of the reporting facilities in Florida to be audited; this will represent approximately 10% of all facilities
• Selection of the number of cases to be reviewed using the selection criteria: maximum between cases
• Audit consists or casefinding (reviewing the source of the data) and re-abstraction (reviewing data compiled for the cancer abstract)

AVAILABILITY OF CANCER REGISTRY DATA

Florida Cancer Data System data are utilized in a variety of ways:

FOR PUBLIC USE

Interactive Data Query is available to obtain cancer statistics (incidence rate) based on the selection of the cancer site, diagnosis year, state or county, sex, and race.

A Public Use File is available upon request and provides cancer data, stripped of identifying information and anonymized for certain specific rare cancers.

FOR RESEARCH USE

Data Extraction and Data Analysis Requests (Statistical and Tabular Data)
Cancer registry staff is available to assist on statistical analyses of data. Because each request is unique, cancer registry staff will discuss the project with the requestor to verify the type of data required and determine the feasibility of fulfilling the request (availability of data, timeframe for fulfillment of the data request, etc.). Based on this information, an estimate of the cost is provided for the statistical analysis and programming conducted by the cancer registry staff.

Research Studies/Projects
For research studies/projects requiring confidential data from the FCDS to conduct research for clinical trials, follow-up studies, etc., data can be obtained upon review and approval from the Florida Department of Health.

A total of 96% of all records in the system are histologically confirmed. Data collected and coded are in accordance with national standards as set forth by the North American Association of Central Cancer Registries. The system uses the International Classification of Diseases Oncology, 3rd edition (ICD-O-3) to code primary site and morphology. The Florida Cancer Data System is part of the U.S. Centers for Disease Control and Prevention’s National Program of Cancer Registries and is nationally certified by the North American Association of Central Cancer Registries.

The system was one of 43 national central cancer registries awarded the NPCR Registry of Distinction achievement in 2024.  This designation indicates the availability of high-quality data for cancer prevention and control activities at the local, regional, and national levels.

The Florida Department of Health contracted with the Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine in 1979 to design, implement, and maintain a statewide cancer registry system. In 1981, the Florida Cancer Data System started collecting case information on new cancers diagnosed and treated in hospitals. The FCDS began collecting from outpatient facilities in 1997.