Before You Request Data…
Before requesting Registry data, be sure to check out several interactive Iowa Data Tools or other National Data Sources to see if any of these sources will fulfill your needs.
Application and Review Process
Investigators and others who wish to use Registry data for research purposes must complete a research data request application, which includes but is not limited to, a description of the proposed study, justification of the necessity of the research, assurances of upholding confidentiality of the data, and specifics about the proposed project. Once your application is received, we will respond within 7 business days.
The application review process varies depending on the nature of the project and data requested. Applications are reviewed by a committee made up of several Iowa Cancer Registry staff members. Review and approval of the project depends on:
- Demonstration of scientific and technical merit of the study
- Justification for the need for any confidential data (if requested)
- IRB review and approval (if applicable)
- Adequate provisions to address the confidentiality and security of the data (formalized in a Data Use Agreement)
- Adequate resources and timeline to conduct the research, and credentials of the researcher
While we will make every effort to work with you to support your project, please note that it may not be feasible for us to collaborate on every study, especially those that request patient contact or require Registry staff to perform extensive analyses.
Cost
The Iowa Cancer Registry may require reimbursement for labor and other direct costs related to completion of research data requests.
- 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, and creating the dataset.
- Patient Contact Studies. Fees will include the staff time and supply costs for our role obtaining the data release permissions required for patient contact studies. Fees are based on the size of the cohort, the recruitment methodology, the supplies required to conduct the agreed-upon recruitment methodology, and the time spent creating and submitting (or working with you to submit) an IRB application, identifying eligible cases and, when required, the providers associated with those cases, managing the agreed-upon recruitment methodology (i.e., mailings and/or phone calls), creating the dataset(s), and finalizing data use agreements.
Letters of Support & Cost Estimates
For University of Iowa researchers, a letter of support is required by the University of Iowa Institutional Review Board if you wish the Iowa Cancer Registry to be the data source for your project. Researchers may also require a letter of support and/or a cost estimate from the Iowa Cancer Registry for a grant submission.
Your first step in obtaining a letter of support or cost estimate is to submit a research data request application to our office. You will need to submit the application at least four weeks ahead of the date that you need a letter of support or cost estimate. If your grant or application deadline has a shorter deadline, please contact us to see if we will be able to grant your request.
Publications and Acknowledgement of the Iowa Cancer Registry
Researchers who are submitting manuscripts, abstracts, or presentations based on research that included Iowa Cancer Registry data should submit the work to the Registry for advance review.
Why do we review your research?
The purpose of the Iowa Cancer Registry review of your intended publication is to confirm that:
- No potentially identifying data are published or presented. This includes suppressing cell counts less than 5, in accordance with Iowa Cancer Registry policy.
- The Iowa Cancer Registry is acknowledged as a data contributor. This acknowledgement should state:
“The Iowa Cancer Registry contributed data for this project. The Iowa Cancer Registry has been funded in whole or in part with Federal funds from the National Cancer Institute, National Institutes of Health, Department of Health and Human Services, under Contract No. HHSN261201800012I, with additional support from the University of Iowa and the State of Iowa.”