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/wcrs/researcherinfo.htm	WCRS Information for Researchers site

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/wcrs/researcherinfo.htm	WCRS Information for Researchers SharePoint site

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

URL	Description
https://www.dhs.wisconsin.gov/wcrs/researcherinfo.htm	DUA External DHS Research, F-01364a.docx available by request and housed on WCRS Researcher SharePoint site. To request access, visit the URL provided.

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 must read and sign a Data Use Agreement (DUA) with the Wisconsin Department of Health Services. The agreement describes limitations on data usage, dissemination of findings, use of personal identifiers, and contact with patients identified through data provided by WCRS. All staff working with confidential data, or with possible exposure to confidential information from the data, are required to sign the DUA's Attachment B, agreeing to abide to all terms within the DUA. Upon study completion, researchers must destroy all files, documents, and/or other records containing original WCRS data with confidential information. Immediately following the destruction of WCRS data, researchers must provide DHS with the DUA's Attachment C, executed by an authorized representative of the research institution.

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

All research studies will be billed a one-time $800 application processing fee, $0.06 per record, and $100 per hour for staff time incurred. Email DHSWCRSDataRequests@dhs.wiscosnin.gov for a more accurate estimate for your specific study.

Registry fee structure URL

IRB fees

IRB review fees required

Wisconsin CaRI Database Information