Last Reviewed: Nov. 30, 2023

Florida Cancer Data System

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Registry Data

Population Data

20,575,272Total Population Count
6.4%% of US Population
7.9%% of US Black Population
3.3%% of US API Population
1.0%% of US AI/AN* Population
9.0%% of US Hispanic Population
6.4%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

130,869Malignant Cases
7.7%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1981

First year high quality, population-based data available for research

1995

Data linked with medicare

Years included in CINA Deluxe

1995-2015

CINA survial years

Participates in the National Interstate Data Exchange Agreement program

Yes

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	Yes	No
Geospatial Studies	Yes	No
Linkage Studies	Yes	No
Rapid Case Ascertainment Studies	No	No
Re-Abstracting/Patterns of Care Studies	Yes	No
Survival Studies	Yes	No

Contact Information

Required Review(s) and Initial Contact

Type of review required

Both local/state IRB review and Registry review

Multiple local IRBs are required (e.g. Institutional registry and state registry)?

Type of request forms required

Separate IRB and Registry forms

Initial cancer registry contact/discussion required prior to submitting (or completing) application

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

Contact Florida DOH IRB

IRB Federalwide Assurance Number

00004682

IRB forms available online

Yes

IRB homepage URL

http://www.floridahealth.gov/provider-and-partner-resources/research/irb/index.html

Method to submit IRB forms

Online submission

Online IRB submission URL

http://flhealth.my.irbmanager.com.

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://fcds.med.miami.edu/inc/datarequest.shtml	Data Requests Information

Method to submit Registry data request

Online submission

Online Registry submission URL

https://fcds.med.miami.edu/inc/datarequest.shtml

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://fcds.med.miami.edu/inc/datarequest.shtml

Registry Data Use (or Research) Agreement URL(s)

URL	Description
https://fcds.med.miami.edu/inc/datarequest.shtml

Process

Processing timeframe for linkage studies and de-identified data release

Greater than 6 months

Processing timeframe for patient contact studies

Greater than 6 months

Human Subjects Protection Training Requirements

Yes

Collaboration with local researcher required

Initial required documentation

Step-by-Step data request submission process

Other requirements and helpful information for researchers

Procedures are likely to be revised within the next year

Data Use and Renewal Requirements

When must study investigators destroy registry data

As noted in approved documents (e.g. IRB/Registry Application, DUA, Confidentiality Agreement)

Is notification of data destruction required

Yes

Describe what to include in the notification or provide the URL for a specific form

Date of destruction

Publication review requirements

N/A

Data use agreement renewal requirements

None

IRB progress report requirements

Annual

How far in advance of IRB expiration must IRB renewal be submitted

More than 60 days

Participates in VPR

Consent Requirements

Physician consent is required before patient contact

Patient consent is obtained by

Researcher

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

None

Registry data payment is due

After researcher receives data

Registry fee structure summary

https://fcds.med.miami.edu/downloads/datarequest/Data%20Request%20Fees%206_2016%20Rev.pdf

Registry fee structure URL