State Health Registry of Iowa - CaRI Database

Iowa CaRI Database Information

Last Reviewed: March 4, 2023

State Health Registry of Iowa

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Registry jurisdiction	Iowa
Type of review required	Both local/state IRB review and Registry review
Type of request forms required	Separate IRB and Registry forms
IRB of record	University of Iowa Institutional Review Board
How to submit request:	Initial cancer registry contact/discussion required prior to submitting application Researcher should submit request to Cancer Registry Cancer Registry via Email to: John Doe Registry Director 101 Home Road, Suite 200B Washington, DC, 11111 Email: Phone: 111-111-1111
Initial required documentation	Login is required to access this information. Log In with your MyNAACCR account.
Step-by-Step data request submission process	Login is required to access this information. Log In with your MyNAACCR account.
Other requirements and helpful information for researchers	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.
Processing timeframe	For linkage studies and de-identified data release: 1 - 3 months For patient contact studies: 3-6 months
Patient Consent and Contact Procedures	Depending on the study, consent with the physician is required before patient contact. Physician consent is obtained by: Registry Patient consent is obtained by: Depends on Study
Pediatric research considerations	None
Registry Fees	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. 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.
IRB Fees	No IRB fees
Collaboration with local researcher required	Yes