Last Reviewed: Nov. 13, 2024

North Dakota Statewide Cancer Registry

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Registry Data

Population Data

751,784Total Population Count
0.2%% of US Population
0.1%% of US Black Population
0.1%% of US API Population
1.3%% of US AI/AN* Population
0.1%% of US Hispanic Population
0.1%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

3,822Malignant Cases
0.2%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1997

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

1997

Data linked with medicare

Years included in CINA Deluxe

1998-2015

CINA survial years

Participates in the National Interstate Data Exchange Agreement program

Yes

Study Participation

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

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

North Dakota Department of Health

IRB Federalwide Assurance Number

FWA00005027

IRB forms available online

Yes

IRB homepage URL

http://ndhealth.gov/IRB/

Method to submit IRB forms

IRB meeting frequency

Quarterly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://ndcancer.org/files/NDSCR%20Data%20Request%20Form.pdf	NDSCR Data Request Form

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://ndcancer.org/files/NDSCR%20Police%20and%20Procedure%20Manual.pdf	NDSCR Policy and Procedure Manual

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

URL	Description
https://ndcancer.org/files/ND%20DUA.pdf	NDDoH Data Use Agreement for Disclosure of Protected [Individually Identifiable] Health Information

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

Yes

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

As noted in approved documents (e.g. IRB/Registry Application, DUA, Confidentiality Agreement)

Is notification of data destruction required

Publication review requirements

N/A

Data use agreement renewal requirements

Annual

IRB progress report requirements

Annual

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

60 days

Participates in VPR

Yes

Consent Requirements

Physician consent is required before patient contact

N/A - No patient contact studies

Pediatric research special requirements

Yes

Describe pediatric research considerations

require consent from patients' guardians ? Yes.

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

N/A

Registry data payment is due

After researcher receives data

Registry fee structure summary

N/A

Registry fee structure URL

IRB fees

IRB review fees required

North Dakota CaRI Database Information