Last Reviewed: Nov. 27, 2023

Louisiana Tumor Registry

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Registry Data

Population Data

4,663,405Total Population Count
1.5%% of US Population
3.4%% of US Black Population
0.5%% of US API Population
0.2%% of US AI/AN* Population
0.4%% of US Hispanic Population
0.6%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

25,874Malignant Cases
1.5%% of US Malignant Cases

Registry type

NPCR/SEER

Year registry became population-based

1988

First year high quality, population-based data available for research

1995

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 (Restrictions - https://www.naaccr.org/national-interstate-data-exchange-agreement/#19)

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

Louisiana State University Health Sciences Center - New Orleans's Human Subjects Research Protection Program and Institutional Review Board

IRB Federalwide Assurance Number

FWA 00002762

IRB forms available online

Yes

IRB homepage URL

https://www.lsuhsc.edu/administration/academic/ors/irb/

Method to submit IRB forms

Online submission

Online IRB submission URL

https://lsuhsc.kuali.co/auth/kuali

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://sph.lsuhsc.edu/louisiana-tumor-registry/data-usestatistics/	Contact Lauren Maniscalco at lspiza@lsuhsc.edu for more information on the LTR’s data release policies.
https://forms.office.com/Pages/ResponsePage.aspx?id=iTYGNNSCiU6jKBq3nMWNnUHZqinSmHdOoenUil96lhRUMUlVUE5NWUpRMVg5V0FaRVJIT0hGWjJRVy4u	Aggregated Data Requests

Method to submit Registry data request

Online submission

Online Registry submission URL

https://forms.office.com/Pages/ResponsePage.aspx?id=iTYGNNSCiU6jKBq3nMWNnUHZqinSmHdOoenUil96lhRUMUlVUE5NWUpRMVg5V0FaRVJIT0hGWjJRVy4u

Registry review meeting frequency

Quarterly

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://sph.lsuhsc.edu/louisiana-tumor-registry/data-usestatistics/	For case-level data requests, researchers are asked to contact Lauren Maniscalco at lspiza@lsuhsc.edu for more information on the LTR’s data release policies.

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

URL	Description
https://sph.lsuhsc.edu/louisiana-tumor-registry/	available upon request

Process

Processing timeframe for linkage studies and de-identified data release

3-6 months

Processing timeframe for patient contact studies

Greater than 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

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.

Procedures are likely to be revised within the next year

Data Use and Renewal Requirements

When must study investigators destroy registry data

Annual justification to retain data is required; At end of study; 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

Project Title, name of dataset received, date of dataset destruction, method of data destruction (example: File Shredder Software), institution name, and individual's name.

Please include: Through this email, I confirm that all electronic data received from the Louisiana Tumor Registry was securely destroyed via [method/software] on [date] and all LTR data in hardcopy or printed format were destroyed using a cross-cut shredder or an equivalent destruction method on [date].

Publication review requirements

60 days in advance

Data use agreement renewal requirements

DUAs do not need to be renewed annually, but individual confidentiality agreements must be signed each year.

IRB progress report requirements

Annual

How far in advance of IRB expiration must IRB renewal be submitted

30 days

Participates in VPR

Yes

Consent Requirements

Physician consent is required before patient contact

Depends on Study

Physician consent is obtained by

Registry

Patient consent is obtained by

Registry

Pediatric research special requirements

Yes

Describe pediatric research considerations

Parent consent is required.

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

There is no charge for aggregated data requests or case-level data requests in which LTR investigators are included as collaborators.

Registry data payment is due

After researcher receives data

Registry fee structure summary

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.

Registry fee structure URL

IRB fees

IRB review fees required

Yes

Irb data fee 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.

IRB fee amounts

https://www.lsuhsc.edu/administration/academic/ors/docs/P&P2.06_IRB%20Protocol%20Review%20Fee%20Policy_v2.1_11.19.2020.docx

Louisiana CaRI Database Information