Last Reviewed: March 4, 2023

State Health Registry of Iowa

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Registry Data

Population Data

3,130,369Total Population Count
1.0%% of US Population
0.3%% of US Black Population
0.4%% of US API Population
0.2%% of US AI/AN* Population
0.3%% of US Hispanic Population
0.3%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

18,582Malignant Cases
1.1%% of US Malignant Cases

Registry type

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

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	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)?

Type of request forms required

Separate IRB and Registry forms

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

University of Iowa Institutional Review Board

IRB Federalwide Assurance Number

FWA00003007

IRB forms available online

IRB homepage URL

https://hso.research.uiowa.edu/

Method to submit IRB forms

Online submission

Online IRB submission URL

https://login.uiowa.edu/uip/login.page?service=https://hawkirb.research.uiowa.edu/hawkirb/

IRB meeting frequency

Weekly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://shri.public-health.uiowa.edu/contact-us/	send an email to Dr. Charlton or Dr. Bentler
https://shri.public-health.uiowa.edu/research/accessing-registry-data-for-research/	Online application

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://shri.public-health.uiowa.edu/cancer-data/research/	Our Data Release Policy is not currently on our website. Contact the Principal Investigator or Registry Director for more information.

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

URL	Description
https://shri.public-health.uiowa.edu/cancer-data/research/	Contact the Registry Director (Dr. Bentler) for more information on the DUA process.

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

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

Investigator Name,
Study Name,
Number of Subjects,
Date of data destruction

Publication review requirements

N/A

Data use agreement renewal requirements

Renewal requirements depend on the terms in the data use agreement.

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

Depends on Study

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Fees are dependent on the amount of effort/work required by the Iowa Cancer Registry. Studies or requests that require minimal effort may not have any fees.

Registry data payment is due

After researcher receives data

Registry fee structure summary

Fees are determined on a case-by-case basis. Registry staff review the protocol or proposal, determine the time/effort required by Iowa Cancer Registry staff and determine fees based upon that review of time/effort.

Registry fee structure URL

IRB fees

IRB review fees required

Iowa CaRI Database Information