Last Reviewed: Nov. 17, 2020

Indiana State Cancer Registry

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Registry Data

Population Data

6,637,989Total Population Count
2.1%% of US Population
1.5%% of US Black Population
0.8%% of US API Population
0.2%% of US AI/AN* Population
0.8%% of US Hispanic Population
0.8%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

35,471Malignant Cases
2.1%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1987

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

1995

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	No	No
Geospatial Studies	Yes	Yes
Linkage Studies	Yes	Yes
Rapid Case Ascertainment Studies	No	No
Re-Abstracting/Patterns of Care Studies	No	No
Survival Studies	No	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

Data request submission first step

Cancer Registry

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://www.in.gov/health/cdpc/cancer/cancer-registry/policy-and-procedure-manuals/	Contact registry for list of documents to submit

Method to submit Registry data request

Registry review meeting frequency

Other

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.in.gov/health/cdpc/cancer/cancer-registry/policy-and-procedure-manuals/	Policy and Procedure Manuals

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

URL	Description
https://www.in.gov/iara/2362.htm	General State Forms Online Catalog
https://forms.in.gov/download.aspx?id=9858	State Form 52104

Process

Processing timeframe for linkage studies and de-identified data release

1 - 3 months

Processing timeframe for patient contact studies

N/A

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

• Updates on studies and analyses are required every 6 months
• Any new researchers having access to the data must be updated on State Form 52104 and submitted to the registry contact
If applicable, current IRB approval for continuation must be maintained, and updates should be submitted to the registry contact

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); At end of study

Is notification of data destruction required

Publication review requirements

N/A

Data use agreement renewal requirements

Annual

IRB progress report requirements

Annual

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

N/A

Participates in VPR

Yes

Consent Requirements

Physician consent is required before patient contact

Yes - Active

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

IRB fees

IRB review fees required

Indiana CaRI Database Information