Last Reviewed: Dec. 5, 2023

Oklahoma Central Cancer Registry

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Registry Data

Population Data

3,917,113Total Population Count
1.2%% of US Population
0.8%% of US Black Population
0.5%% of US API Population
17.0%% of US AI/AN* Population
0.7%% of US Hispanic Population
1.1%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

20,358Malignant Cases
1.2%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1997

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

1997

Data linked with medicare

Years included in CINA Deluxe

1997-2015

CINA survial years

2008-2014

Participates in the National Interstate Data Exchange Agreement program

Yes (Restrictions - https://www.naaccr.org/national-interstate-data-exchange-agreement/#9)

Study Participation

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

Type of request forms required

Separate IRB and Registry forms

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

Yes

Data request submission first step

IRB

Local/State IRB Review Requirements

IRB of record

IORG0000576

IRB Federalwide Assurance Number

FWA00000183

IRB forms available online

Yes

IRB homepage URL

https://oklahoma.gov/health/health-education/data-and-statistics/institutional-review-board.html

Method to submit IRB forms

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://oklahoma.gov/health/health-education/data-and-statistics/institutional-review-board/forms.html	IRB Forms are available here
https://oklahoma.gov/health/health-education/chronic-disease-prevention/oklahoma-central-cancer-registry-occr.html	Main page for the OCCR- the Data Application form is not available online.

Method to submit Registry data request

Registry review meeting frequency

Monthly

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://oklahoma.gov/content/dam/ok/en/health/health2/aem-documents/organization/institutional-review-board/1-40_institutional_review_board-IRB.pdf	IRB Policy & Procedures

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

URL	Description
https://oklahoma.gov/health/health-education/chronic-disease-prevention/oklahoma-central-cancer-registry-occr.html	OCCR website

Process

Processing timeframe for linkage studies and de-identified data release

Greater than 6 months

Processing timeframe for patient contact studies

N/A

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

It is preferable to check in with OCCR via email prior to completing your data application to ensure that staff have the availability to fulfill the request.

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; At end of study; 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

Proof of data destruction will be required per specifications of the data use agreement.

Publication review requirements

30 days in advance

Data use agreement renewal requirements

Annual

IRB progress report requirements

Dependent on level of review.

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

N/A - No patient contact studies

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

None

Registry data payment is due

Before researcher receives data

Registry fee structure summary

The Registry Fees mentioned above refer to time spent on conducting linkages with study cohorts. The fees are based on time spent on data request: reviewing instructions, software installation (if applicable), conducting linkages, reviewing possible matches. It is $50/hour, the time/cost would be estimated for the researcher prior for confirmation. After the data linkage has been completed, the researcher will be invoiced for the final cost that would need to be paid prior to receiving the data.

Registry fee structure URL

https://oklahoma.gov/health/health-education/chronic-disease-prevention/oklahoma-central-cancer-registry-occr.html

IRB fees

IRB review fees required

Oklahoma CaRI Database Information