Last Reviewed: Jan. 8, 2024

Alaska Cancer Registry

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Registry Data

Population Data

738,015Total Population Count
0.2%% of US Population
0.1%% of US Black Population
0.3%% of US API Population
5.2%% of US AI/AN* Population
0.1%% of US Hispanic Population
0.2%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

2,952Malignant Cases
0.2%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1996

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

1996

Data linked with medicare

Years included in CINA Deluxe

1996-2015

CINA survial years

2008-2014

Participates in the National Interstate Data Exchange Agreement program

Yes

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	No
Re-Abstracting/Patterns of Care Studies	No	No
Survival Studies	Yes	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://health.alaska.gov/dph/VitalStats/Documents/cancerregistry/assets/DataUse_App.pdf	Alaska Cancer Registry Data Use for Research Application
https://health.alaska.gov/dph/VitalStats/Documents/cancerregistry/assets/ResearchAgreement.pdf	Research Agreement

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

No URLs specified.

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

URL	Description
https://health.alaska.gov/dph/VitalStats/Documents/cancerregistry/assets/ResearchAgreement.pdf	Research Agreement
https://health.alaska.gov/dph/VitalStats/Documents/cancerregistry/assets/DataUse_App.pdf	Research Application

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

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

None

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

Registry

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

There is no fee if data request can be accomplished under 3 hours.

Registry data payment is due

After researcher receives data

Registry fee structure summary

Fees are based on the data analyst's time for accomplishing the data request.

Registry fee structure URL

IRB fees

IRB review fees required

Alaska CaRI Database Information