Last Reviewed: Jan. 8, 2024

Wisconsin Cancer Reporting System

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Registry Data

Population Data

5,776,537Total Population Count
1.8%% of US Population
0.9%% of US Black Population
0.9%% of US API Population
1.9%% of US AI/AN* Population
0.7%% of US Hispanic Population
0.7%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

33,427Malignant Cases
2.0%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1976

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

2008-2014

Participates in the National Interstate Data Exchange Agreement program

Yes (Restrictions - https://www.naaccr.org/national-interstate-data-exchange-agreement/#21)

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	Yes	Yes
Geospatial Studies	Yes	Yes
Linkage Studies	Yes	Yes
Rapid Case Ascertainment Studies	Yes	Yes
Re-Abstracting/Patterns of Care Studies	Yes	Yes
Survival Studies	Yes	Yes

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://www.dhs.wisconsin.gov/publications/p0/p00625.pdf	Cancer Research Application Manual, P-00625

Method to submit Registry data request

Registry review meeting frequency

Monthly

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.dhs.wisconsin.gov/publications/p0/p00625.pdf	Cancer Research Application Manual, P-00625

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

URL	Description
https://www.dhs.wisconsin.gov/forms/f0/f00977.pdf	Research Data Use Agreement, F-00977
http://www.dhs.wisconsin.gov/forms/f0/f00979.pdf	Confidentiality Pledge, F-00979

Process

Processing timeframe for linkage studies and de-identified data release

3-6 months

Processing timeframe for patient contact studies

Greater than 6 months

Human Subjects Protection Training Requirements

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

The Principal Investigator (PI) is required to sign the Research Data Use Agreement, F-00977. This contract describes data destruction terms under B.4. Immediately following the destruction of WCRS data, the PI agrees to contact DHS (preferably email DHSWCRSDataRequests@dhs.wisconsin.gov) with a written declaration executed by an authorized representative of recipient institution that identifies the study by name, date WCRS data have been destroyed and the method used, as well as confirmation that no individual-level information, data, or copies were retained in the possession of the research entity.

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

Depends on Study

Physician consent is obtained by

Researcher

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

$800 minimum base fee for processing application, plus $100 hourly rate for data extraction, preparation, and/or linkage.

Registry fee structure URL

https://www.dhs.wisconsin.gov/publications/p0/p00625.pdf

IRB fees

IRB review fees required

Wisconsin CaRI Database Information