The Florida Cancer Data System - Frequently Asked Questions




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  • What is FCDS? Answer
  • What kind of cancer cases must be reported to FCDS? Answer
  • What kind of data is collected? Answer
  • What about patient confidentiality? Answer
  • Who is required to report cancer cases to FCDS? Answer
  • Who does the actual data collection? Answer
  • Does FCDS provide training in cancer data collection? Answer
  • How are cases reported to FCDS? Answer
  • How often do Florida Hospital Facilities need to report cancer cases to FCDS? Answer
  • Who uses FCDS data? Answer
  • What are FCDS data used for? Answer
  • How do I get more information about FCDS? Answer
  • How do I get more information about specific cancers? Answer
  • Still Have Questions? - Ask Us: Gary Levin



    What is FCDS (Florida Cancer Data System)?

    FCDS is Florida's statewide cancer surveillance system. FCDS was legislatively mandated in 1978 to collect incidence data on all cases seen in Florida since 1981. The goal of FCDS is to reduce death and illness due to cancer by providing data on cancer incidence. These data are used to observe cancer trends and provide a research base for studies into the possible causes of cancer.

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    What kind of cancer cases must be reported to FCDS?

    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) and anus (AIN III) and Myelodysplastic Syndrome (MDS). All patients with an active, benign or borderline brain or central nervous system (CNS) tumor, diagnosed on or after 01/01/2004, whether being treated or not are reportable. All cancer cases diagnosed and/or treated in Florida since 1981 must be reported to FCDS.

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    What kind of data is collected?

    FCDS requires that the data collected include information which indicates diagnosis, stage of disease, medical history, patient demographics, laboratory data, tissue diagnosis and radiation, surgical or other methods of diagnosis or treatment for each cancer diagnosed or treated in Florida.

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    What about patient confidentiality?

    According to Florida Statute 381, Public Health: General Provisions, "Information submitted in reports required by this section is confidential, exempt from the provisions of s.119.07 (1) and is to be made public only when necessary to public health. A report so submitted is not a violation of the confidential relationship between practitioner and patient."
    Patient record and healthcare facility confidentiality is a growing concern with cancer and other disease reporting. FCDS frequently reminds reporting facilities and FCDS staff that patient confidentiality must be maintained when mailing, faxing and discussing cases over the phone.
    FCDS continues to emphasize that behind the data we use every day are real people. Once a breach in confidentiality has occurred, it is nearly impossible to regain the trust that patient confidentiality can be maintained in the future. FCDS continues to adhere to strict security measures to assure patient and institutional confidentiality.

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    Who is required to report cancer cases to FCDS?

    All facilities licensed under FL statute 395 and each freestanding radiation therapy center under statue 408.07; All ambulatory surgical centers as specified by Rule 64D-3.006; Any licensed practitioner in the state of Florida that practices medicine, osteopathic, chiropractic medicine, naturopathy or veterinary medicine are required to report under Chapter 381 or any laboratory licensed under chapter FL statute 483 that diagnoses or suspects the existence of a cancer. See our Law and Rules page for more detail.

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    Who does the actual data collection?

    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 FCDS or though other recognized training programs.

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    Does FCDS provide training in cancer data collection?

    Yes, FCDS offers an online training course for incidence abstracting. The FCDS incidence abstracter training covers the minimum basic material required to execute Florida incidence abstracting. We also host several teleconferences a year. Our Downloads page has archived teleconferences. Contact FCDS at (305) 243-4600 for details.

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    How are cases reported to FCDS?

    Cases are reported to FCDS electronically. FCDS follows nationally recognized reporting protocol to assure consistency in case reporting from facility to facility.
    FCDS does provide Florida reporting facilities with the free Internet Abstracting and Data Entry module (IDEA) that meets the minimum requirements for FCDS reporting of cancer cases.

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    How often do Florida Hospital Facilities need to report cancer cases to FCDS?

    FCDS policy requires that Florida health facilities report cancer cases at least quarterly.

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    Who uses FCDS data?

    FCDS data are used by approved researchers, health planners, epidemiologists, physicians, Florida legislators, medical students and a variety of other qualified parties.
    Data are always held in strictest confidence. Names of patients are never released unless researchers have been approved to receive names following a rigorous approval process with the Florida Department of Health.

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    What is FCDS Data used for?

  • FCDS data is used in a variety of ways:
  • To inform health professionals and educate citizens regarding specific cancer risks.
  • To answer public questions and concerns about cancer
  • To focus cancer control activities in the state
  • To monitor the occurrence of cancer
  • To aid in research studies
  • To develop health services and screening programs
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    How do I get more information about FCDS?

    See our Contact Us page for more detail.

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    How do I get more information about specific cancers?

    Contact the American Cancer Society at 800 - 4CANCER (800-422-6237)

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    Direct any comments or questions to Gary Levin, Administrative Director