Last Reviewed: Feb. 8, 2019

Georgia Cancer Registry

Print Full Details

Registry Data

Population Data

10,293,815Total Population Count
3.2%% of US Population
7.5%% of US Black Population
2.2%% of US API Population
0.0%% of US AI/AN* Population
1.7%% of US Hispanic Population
2.5%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

51,964Malignant Cases
3.1%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1995

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

2000

Data linked with medicare

Yes

Years included in CINA Deluxe

1997-2015

CINA survial years

2008-2014

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	Yes
Linkage Studies	Yes	Yes
Rapid Case Ascertainment Studies	Yes	Yes
Re-Abstracting/Patterns of Care Studies	Yes	No
Survival Studies	No	Yes

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)?

Yes

Type of request forms required

IRB form for both reviews

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

Yes

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

Georgia Department of Public Health

IRB Federalwide Assurance Number

FWA00003032

IRB forms available online

Yes

IRB homepage URL

https://dph.georgia.gov/institutional-review-board

Method to submit IRB forms

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://dph.georgia.gov/institutional-review-board	Same as State IRB
https://gadph.justfoia.com/publicportal/home/newrequest	DPH PHIP Data Request

Method to submit Registry data request

Online submission

Online Registry submission URL

https://gadph.justfoia.com/publicportal/home/newrequest

Registry review meeting frequency

Other

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://dph.georgia.gov/reporting-cancer	Included in the Policy and Procedure Manual
https://gadph.justfoia.com/publicportal/home/newrequest	DPH Public Health Information Portal (PHIP)

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

URL	Description
https://dph.georgia.gov/reporting-cancer	Included in the Policy and Procedure Manual
https://gadph.justfoia.com/publicportal/home/newrequest	DPH Public Health Information Portal (PHIP)

Process

Processing timeframe for linkage studies and de-identified data release

1 - 3 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

Cost associated with data linkage and active active recruitment of patients if needed

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

An email with study number and title from the PI stating that the data are destroyed.

Publication review requirements

30 days in advance

Data use agreement renewal requirements

Annual

IRB progress report requirements

Annual

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

30 days

Participates in VPR

Yes

Consent Requirements

Physician consent is required before patient contact

Yes - Passive

Physician consent is obtained by

Registry

Patient consent is obtained by

Researcher

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Registry fee varies based on the research

Registry data payment is due

After researcher receives data

Registry fee structure summary

Linkage with no follow up $5,000
Linakge with follow up $10,000
Involvment in Patients recruitment and consent --based on expected number of patients and research protocol. Resrearch will sign additional Data User Agreement.

Registry fee structure URL

IRB fees

IRB review fees required

Yes

Irb data fee exceptions

https://dph.georgia.gov/institutional-review-board
fully described on Georgia IRB website

IRB fee amounts