Last Reviewed: March 11, 2021

Missouri Cancer Registry and Research Center

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Registry Data

Population Data

6,088,672Total Population Count
1.9%% of US Population
1.7%% of US Black Population
0.7%% of US API Population
0.0%% of US AI/AN* Population
0.4%% of US Hispanic Population
0.5%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

33,755Malignant Cases
2.0%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1985

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

1996

Data linked with medicare

Years included in CINA Deluxe

1998-2015

CINA survial years

2008-2014

Participates in the National Interstate Data Exchange Agreement program

Yes

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	Yes	No
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

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

https://health.mo.gov/data/irb/

IRB Federalwide Assurance Number

IRB

IRB forms available online

Yes

IRB homepage URL

https://health.mo.gov/data/irb/

Method to submit IRB forms

IRB meeting frequency

Monthly

2nd IRB of record

https://research.missouri.edu/irb/

2nd IRB Federalwide Assurance Number

IRB00000731

2nd IRB forms available online

Yes

2nd IRB homepage URL

https://research.missouri.edu/irb/

Method to submit 2nd IRB forms

2nd IRB meeting frequency

Monthly

Process

Processing timeframe for linkage studies and de-identified data release

1 - 3 months

Processing timeframe for patient contact studies

Greater than 6 months

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

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

Signed data destruction letter
Indicate that the data have been destroyed
Describe the method used to destroy the data

Publication review requirements

60 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 - Active

Physician consent is obtained by

Registry

Patient consent is obtained by

Registry

Pediatric research special requirements

Yes

Describe pediatric research considerations

Additional requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Registry data payment is due

After researcher receives data

Registry fee structure summary

Our basic fee schedule for linkages is based on the number of records please review access-to-data fee structure on our website. There is an additional fee for lower data quality (defined as more than 10% of the records containing incorrect or missing values in any of the main linkage variables: first name, last name, sex, date of birth, and Social Security number) since that results in a higher manual review effort; and there are some miscellaneous fees for any unusual aspects that would cause extra work, but these are expected to usually not be relevant.

Registry fee structure URL

https://medicine.missouri.edu/centers-institutes-labs/cancer-registry-research-center/resources/access-to-data

IRB fees

IRB review fees required

Missouri CaRI Database Information