Last Reviewed: Nov. 27, 2023

Nebraska Cancer Registry

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Registry Data

Population Data

1,903,555Total Population Count
0.6%% of US Population
0.2%% of US Black Population
0.3%% of US API Population
1.0%% of US AI/AN* Population
0.4%% of US Hispanic Population
0.4%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

10,260Malignant Cases
0.6%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1987

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

1995

Data linked with medicare

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/#25)

Study Participation

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

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

Yes

Data request submission first step

Cancer Registry

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://dhhs.ne.gov/Cancer%20Registry%20Documents/Research%20Data%20Request.pdf	Research Data Request Form
https://dhhs.ne.gov/Cancer%20Registry%20Documents/Confidentiality%20Agreement.pdf	Confidentiality Agreement
https://dhhs.ne.gov/Cancer%20Registry%20Documents/Instructions%20For%20Request%20For%20Data.pdf	Data Request Acknowledgment for Research Project

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://dhhs.ne.gov/Cancer%20Registry%20Documents/Instructions%20For%20Request%20For%20Data.pdf	Data Request Acknowledgment for Research Project

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

URL	Description
https://dhhs.ne.gov/Cancer%20Registry%20Documents/Confidentiality%20Agreement.pdf	Confidentiality Agreement

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

Collaboration with local researcher required

Initial required documentation

Step-by-Step data request submission process

Other requirements and helpful information for researchers

Procedures are likely to be revised within the next year

Data Use and Renewal Requirements

When must study investigators destroy registry data

At end of study; As noted in approved documents (e.g. IRB/Registry Application, DUA, Confidentiality Agreement)

Is notification of data destruction required

Publication review requirements

30 days in advance

Data use agreement renewal requirements

Case by case

IRB progress report requirements

Submit with other documents at initial request.

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

Registry

Pediatric research special requirements

Yes

Describe pediatric research considerations

Permission is required from the guardian of the pediatric patient for patient contact studies.

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Depend on study

Registry data payment is due

Before researcher receives data

Registry fee structure summary

For data preparation, $50 per hour may be charged.

Registry fee structure URL

IRB fees

IRB review fees required

Nebraska CaRI Database Information