Last Reviewed: Dec. 4, 2023

Metropolitan Detroit Cancer Surveillance System

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Registry Data

Population Data

3,880,110Total Population Count
1.2%% of US Population
2.2%% of US Black Population
1.0%% of US API Population
0.0%% of US AI/AN* Population
0.3%% of US Hispanic Population
0.4%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

23,090Malignant Cases
1.4%% of US Malignant Cases

Registry type

NPCR/SEER

Year registry became population-based

1973

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

1973

Data linked with medicare

Yes

Years included in CINA Deluxe

CINA survial years

Participates in the National Interstate Data Exchange Agreement program

Yes

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

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

Separate IRB and Registry forms

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

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

Wayne State University (WSU) Institutional Review Board (IRB)

IRB Federalwide Assurance Number

FWA 00002460

IRB forms available online

Yes

IRB homepage URL

https://research.wayne.edu/irb

Method to submit IRB forms

Online submission

Online IRB submission URL

https://research.wayne.edu/eprotocol

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
http://research1.karmanos.org/epid/contact.html	You can email the MDCSS contact or use the form to the left. Please provide a summary description of the proposed project and provide a copy of the study protocol.
https://research4.karmanos.org/ePRMS/default.aspx	Scientific Review Committe: KCI PRMC - application for access to the PRMS system to submit a review application.

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

No URLs specified.

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

No URLs specified.

Process

Processing timeframe for linkage studies and de-identified data release

1 - 3 months

Processing timeframe for patient contact studies

3-6 months

Human Subjects Protection Training Requirements

Yes

Collaboration with local researcher required

Yes

Initial required documentation

Step-by-Step data request submission process

Other requirements and helpful information for researchers

Patient Contact Studies and Data Linkages with a Key Require:
1. Approval by the MDCSS Director or Assistant Director for Research.
2. Collaboration with and inclusion of a local MDCSS research program scientist.
3. Review and approval by the scientific review board (KCI Protocol Review and Monitoring Committee).
4. Wayne State University (WSU) Institutional Review Board (IRB) review and approval.
5. Patient identifiers will not be released.

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

Data destruction notifications should include the PI name, requestor name, date of data request, study name, description of the data and a statement that the data was destroyed, the date destroyed, the person by whom it was destroyed and the method of destruction.

Publication review requirements

90 days in advance

Data use agreement renewal requirements

None

IRB progress report requirements

Annual

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

60 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

Registry

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Requests for data frequency or cancer information do not have fees assessed. Requests for sophisticated analytical support will be charged fees by the hour.

Registry data payment is due

Before researcher receives data

Registry fee structure summary

Due to university regulations, fees can change over time. The current fee structure is listed below on the university cancer research institute website.

Registry fee structure URL

https://www.karmanos.org/karmanos/epidemiology-research-core

IRB fees

IRB review fees required

Yes

Irb data fee exceptions

WSU IRB fees are charged only to Industry and For Profit companies. Nonprofits are not charged fees.

IRB fee amounts

Initial submission, Full Board review = $3000. Initial submission, Expedited review = $2000. Continuing review = $1250. Full Board Amendment review = $750. Expedited Amendment review = $100. Final report/close-out = $250.

Detroit Metropolitan Area CaRI Database Information