Last Reviewed: Oct. 9, 2023

North Carolina Central Cancer Registry

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Registry Data

Population Data

10,153,833Total Population Count
3.2%% of US Population
5.2%% of US Black Population
1.6%% of US API Population
1.0%% of US AI/AN* Population
1.6%% of US Hispanic Population
2.6%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

56,783Malignant Cases
3.3%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1990

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/#11)

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	Yes	No
Geospatial Studies	Yes	No
Linkage Studies	Yes	No
Rapid Case Ascertainment Studies	Yes	No
Re-Abstracting/Patterns of Care Studies	Yes	No
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://SCHS.dph.ncdhhs.gov/units/CCR

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://SCHS.dph.ncdhhs.gov/units/CCR

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

URL	Description
https://SCHS.dph.ncdhhs.gov/units/CCR

Process

Processing timeframe for linkage studies and de-identified data release

3-6 months

Processing timeframe for patient contact studies

3-6 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

Contact the CCR Director for estimated charges for data release so it could be included in the grant application.

Procedures are likely to be revised within the next year

Yes

Data Use and Renewal Requirements

When must study investigators destroy registry data

Other (please contact us)

Is notification of data destruction required

Yes

Describe what to include in the notification or provide the URL for a specific form

Https://SCHS.dph.ncdhhs.gov/units/CCR

Publication review requirements

30 days in advance

Data use agreement renewal requirements

DUA specific to each studies has to be executed.

IRB progress report requirements

None

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

Yes - Passive

Physician consent is obtained by

Researcher

Patient consent is obtained by

Researcher

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Registry data payment is due

After researcher receives data

Registry fee structure summary

Please contact the registry director.

Registry fee structure URL

IRB fees

IRB review fees required

North Carolina CaRI Database Information