Last Reviewed: Dec. 1, 2023

Nevada Statewide Cancer Registry

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Registry Data

Population Data

2,919,875Total Population Count
0.9%% of US Population
0.7%% of US Black Population
1.4%% of US API Population
2.3%% of US AI/AN* Population
1.4%% of US Hispanic Population
1.3%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

12,878Malignant Cases
0.8%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1995

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

1995

Data linked with medicare

Yes

Years included in CINA Deluxe

1997-2010

CINA survial years

Participates in the National Interstate Data Exchange Agreement program

Yes (Restrictions - https://www.naaccr.org/national-interstate-data-exchange-agreement/#33)

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	No	No
Geospatial Studies	No	No
Linkage Studies	Yes	No
Rapid Case Ascertainment Studies	No	No
Re-Abstracting/Patterns of Care Studies	No	No
Survival Studies	No	No

Contact Information

Required Review(s) and Initial Contact

Type of review required

Registry review only

Initial cancer registry contact/discussion required prior to submitting (or completing) application

Data request submission first step

Cancer Registry

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://dpbh.nv.gov/Programs/NCCR/Nevada_Central_Cancer_Registry_(NCCR)_-Home/

Method to submit Registry data request

Registry review meeting frequency

Quarterly

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.leg.state.nv.us/NRS/NRS-457.html	NRS 457
https://www.leg.state.nv.us/NAC/NAC-457.html	NAC 457

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

URL	Description
http://dhhs.nv.gov/uploadedFiles/dhhsnvgov/content/Programs/Office_of_Analytics/Images/Data_Request_Form.pdf	Data Request Form

Process

Processing timeframe for linkage studies and de-identified data release

1 - 3 months

Processing timeframe for patient contact studies

N/A

Human Subjects Protection Training Requirements

Collaboration with local researcher required

Initial required documentation

Step-by-Step data request submission process

Other requirements and helpful information for researchers

It is important to stress the review and approval requirements of proposed publications based on cancer registry data per NAC 457.140. Researchers who willfully violate these provisions after having signed a statement acknowledging them may incur legal liability for their conduct.

Procedures are likely to be revised within the next year

Data Use and Renewal Requirements

When must study investigators destroy registry data

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

No form or URL

Publication review requirements

90 days in advance

Data use agreement renewal requirements

Annual

IRB progress report requirements

None

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

N/A

Participates in VPR

Yes

Consent Requirements

Physician consent is required before patient contact

Patient consent is obtained by

Researcher

Pediatric research special requirements

Yes

Describe pediatric research considerations

Parental consent would be required instead of patient consent for confidential, personal identifying information from the registry.

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

No exceptions

Registry data payment is due

After researcher receives data

Registry fee structure summary

NAC 457 section 2. medical researcher who obtains data from the registry, a fee of $200 or the actual cost of providing the data, whichever is more. We usually follow the formula from NCI.

Registry fee structure URL

https://www.leg.state.nv.us/NAC/NAC-457.html#NAC457Sec150

IRB fees

IRB review fees required

Nevada CaRI Database Information