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Michigan Cancer Surveillance Program

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Registry Data

Population Data

9,953,864Total Population Count
3.1%% of US Population
3.3%% of US Black Population
1.7%% of US API Population
2.0%% of US AI/AN* Population
0.9%% of US Hispanic Population
1.1%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

55,623Malignant Cases
3.3%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1985

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

Participates in the National Interstate Data Exchange Agreement program

Yes (Restrictions - https://www.naaccr.org/national-interstate-data-exchange-agreement/#1)

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

Local/state IRB review only

Multiple local IRBs are required (e.g. Institutional registry and state registry)?

Yes

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

Yes

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

Michigan Department of Health and Human Services (MDHHS)

IRB Federalwide Assurance Number

Title 45 Code of Federal Regulations Part 46 - "The Common Rule"

IRB forms available online

Yes

IRB homepage URL

https://www.michigan.gov/mdhhs/0,5885,7-339-71551_2945_32550---,00.html

Method to submit IRB forms

IRB meeting frequency

Monthly

Process

Processing timeframe for linkage studies and de-identified data release

Greater than 6 months

Processing timeframe for patient contact studies

Greater than 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

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

MDHHS IRB Annual Progress Report

Publication review requirements

90 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

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

None

Registry data payment is due

After researcher receives data

Registry fee structure summary

Statistical analysis, Programming, data coordination, Status calls, Data pull, Patient look-up, Linkage, Chart Abstraction, Mailings (as applicable).

Registry fee structure URL

IRB fees

IRB review fees required

Yes

Irb data fee exceptions

Exception: MCSP federal cancer registry grantee funding specific projects.

IRB fee amounts

$225 Application Coordination Fee, $250 MDHHS IRB Fee, and $250 MCSP Scientific Advisory Board (if applicable)

Michigan CaRI Database Information