Last Reviewed: Feb. 8, 2019

Kentucky Cancer Registry

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Registry Data

Population Data

4,438,385Total Population Count
1.4%% of US Population
0.9%% of US Black Population
0.4%% of US API Population
0.0%% of US AI/AN* Population
0.3%% of US Hispanic Population
0.3%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

27,645Malignant Cases
1.6%% of US Malignant Cases

Registry type

NPCR/SEER

Year registry became population-based

1991

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

1995

Data linked with medicare

Yes

Years included in CINA Deluxe

1995-2015

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	No
Linkage Studies	Yes	No
Rapid Case Ascertainment Studies	Yes	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

Registry review only

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

Yes

Data request submission first step

Cancer Registry

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://redcap.uky.edu/redcap/surveys/?s=NL8TRLK3HM

Method to submit Registry data request

Online submission

Online Registry submission URL

https://redcap.uky.edu/redcap/surveys/?s=NL8TRLK3HM

Registry review meeting frequency

Other

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.kcr.uky.edu/research/how.php

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

URL	Description
https://redcap.uky.edu/redcap/surveys/?s=NL8TRLK3HM

Process

Processing timeframe for linkage studies and de-identified data release

Less than 1 month

Processing timeframe for patient contact studies

1 - 3 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

Annual justification to retain data is required; As noted in approved documents (e.g. IRB/Registry Application, DUA, Confidentiality Agreement)

Is notification of data destruction required

Publication review requirements

N/A

Data use agreement renewal requirements

Annual

IRB progress report requirements

None

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

N/A

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

N/A

Registry data payment is due

After researcher receives data

Registry fee structure summary

Fees are charged for data linkage studies and for patient recruitment. The fees are determined based on registry staff time. A conference call with registry staff and the researcher must be scheduled prior to applying for access to data in order to calculate a specific fee.

Registry fee structure URL

IRB fees

IRB review fees required

Kentucky CaRI Database Information