Louisiana Tumor Registry - CaRI Database

Louisiana CaRI Database Information

Last Reviewed: Nov. 27, 2023

Louisiana Tumor Registry

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Registry jurisdiction	Louisiana
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	Louisiana State University Health Sciences Center - New Orleans's Human Subjects Research Protection Program and 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 Online submission
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	If the LTR is not participating in the research (i.e. only conducting the linkage but not analyzing data or preparing manuscripts), IRB approval from LSUHSC is not required, because this is not considered human subjects' research for LTR. However, IRB approval would be required from the researcher's institution if human subjects' research is being conducted.
Processing timeframe	For linkage studies and de-identified data release: 3-6 months For patient contact studies: Greater than 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: Registry
Pediatric research considerations	Parent consent is required.
Registry Fees	For linkage projects, the fee is calculated based on the number of records needing to be linked or staff time to complete the linkage. For patient survey projects, the fee is calculated based on staff time, supplies, and other related costs. Exceptions: There is no charge for aggregated data requests or case-level data requests in which LTR investigators are included as collaborators.
IRB Fees	https://www.lsuhsc.edu/administration/academic/ors/docs/P&P2.06_IRB%20Protocol%20Review%20Fee%20Policy_v2.1_11.19.2020.docx Exceptions: IRB Protocol Review Fee Policy: It is the policy of LSUHSC-NO to charge for IRB review of industry-sponsored studies as a mechanism to support the administrative costs of such reviews. Non LSUHSC-NO sites in federally sponsored multicenter clinical research studies for which the LSUHSC-NO IRB has agreed to provide oversight as the Single IRB of record are also charged fees to cover costs that would not otherwise be incurred.
Collaboration with local researcher required	Yes