State Health Registry of Iowa
Registry 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
- 18,582Malignant Cases
- 1.1%% of US Malignant Cases
SEER
1973
1973
Yes
1995-2015
2008-2014
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
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Required Review(s) and Initial Contact
Both local/state IRB review and Registry review
No
Separate IRB and Registry forms
Yes
Cancer Registry
Local/State IRB Review Requirements
University of Iowa Institutional Review Board
FWA00003007
No
Online submission
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 |
As needed
| 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. |
| 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
1 - 3 months
3-6 months
Yes
Yes
Login is required to access this information. Log In with your MyNAACCR account.
Login is required to access this information. Log In with your MyNAACCR account.
The ICR may require reimbursement for staff time and other direct costs for the services performed to carry out data requests.
• Data requests, data expertise, and data linkages. Fees will be based on the size of the cohort and time spent creating the IRB application, conducting the linkage, manually reviewing matched cases, creating the dataset, and/or providing dataset or analytic expertise.
• Patient contact studies. Fees will be based on the size of the cohort, the supplies required to conduct the study protocol, and time spent creating the IRB application, identifying eligible cases, creating the dataset(s), and managing the conduct of the study protocol.
No
Data Use and Renewal Requirements
As noted in approved documents (e.g. IRB/Registry Application, DUA, Confidentiality Agreement)
Yes
Investigator Name,
Study Name,
Number of Subjects,
Date of data destruction
30 days in advance
Renewal requirements depend on the terms in the data use agreement.
Annual
60 days
Yes
Consent Requirements
Depends on Study
Registry
Depends on Study
No
Registry fees
Yes
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.
Before researcher receives data
The ICR may require reimbursement for staff time and other direct costs for the services performed to carry out data requests.
• Data requests, data expertise, and data linkages. Fees will be based on the size of the cohort and time spent creating the IRB application, conducting the linkage, manually reviewing matched cases, creating the dataset, and/or providing dataset or analytic expertise.
• Patient contact studies. Fees will be based on the size of the cohort, the supplies required to conduct the study protocol, and time spent creating the IRB application, identifying eligible cases, creating the dataset(s), and managing the conduct of the study protocol.
IRB fees
No