Last Reviewed: Nov. 30, 2022

Illinois State Cancer Registry

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Registry Data

Population Data

12,813,166Total Population Count
4.0%% of US Population
4.3%% of US Black Population
3.7%% of US API Population
0.0%% of US AI/AN* Population
3.8%% of US Hispanic Population
2.7%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

69,572Malignant Cases
4.1%% of US Malignant Cases

Registry type

NPCR/SEER

Year registry became population-based

1986

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

1986

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

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	Yes	No
Geospatial Studies	Yes	No
Linkage Studies	Yes	No
Rapid Case Ascertainment Studies	Yes	No
Re-Abstracting/Patterns of Care Studies	Yes	No
Survival Studies	No	No

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)?

Type of request forms required

IRB form for both reviews

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

Illinois Dept of Public Health

IRB Federalwide Assurance Number

IRB forms available online

IRB homepage URL

Method to submit IRB forms

IRB meeting frequency

Registry Review Requirements

Registry Data Request Form URL(s)

No URLs specified.

Method to submit Registry data request

Registry review meeting frequency

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

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

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

Completion of the Certification of Data Destruction form.

Publication review requirements

60 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

30 days

Participates in VPR

Yes

Consent Requirements

Physician consent is required before patient contact

Patient consent is obtained by

Depends on Study

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

None

Registry data payment is due

Before researcher receives data

Registry fee structure summary

Fees are based on the number of hours it takes to complete the request.

Registry fee structure URL

IRB fees

IRB review fees required

Illinois CaRI Database Information

Illinois State Cancer Registry

Registry Data

Study Participation

Contact Information

Required Review(s) and Initial Contact

Local/State IRB Review Requirements

Registry Review Requirements

Process

Data Use and Renewal Requirements

Consent Requirements

Registry fees

IRB fees