Last Reviewed: Jan. 30, 2019

SEER Alaska Native Tumor Registry

Print Full Details

Registry Data

Population Data

NoneTotal Population Count
%% of US Population
%% of US Black Population
%% of US API Population
%% of US AI/AN* Population
%% of US Hispanic Population
%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

NoneMalignant Cases
%% of US Malignant Cases

Registry type

SEER

Year registry became population-based

1974

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

1969

Data linked with medicare

Yes

Years included in CINA Deluxe

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	Yes
Linkage Studies	Yes	No
Rapid Case Ascertainment Studies	No	No
Re-Abstracting/Patterns of Care Studies	No	No
Survival Studies	Yes	No

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

Yes

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

Alaska Area IRB

IRB Federalwide Assurance Number

IRB00000636

IRB forms available online

Yes

IRB homepage URL

http://irbnet.org

Method to submit IRB forms

Online submission

Online IRB submission URL

http://irbnet.org

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
http://anthctoday.org/epicenter/antr.html#contact

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
http://anthctoday.org/epicenter/antr.html

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

URL	Description
http://anthctoday.org/epicenter/antr.html

Process

Processing timeframe for linkage studies and de-identified data release

3-6 months

Processing timeframe for patient contact studies

N/A

Human Subjects Protection Training Requirements

Yes

Collaboration with local researcher required

Yes

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

Yes

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

Written confirmation to ANTR PI of data destruction.

Publication review requirements

90 days in advance

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

Registry fees

Registry fees are charged to obtain data

IRB fees

IRB review fees required

Alaska Native Tumor Registry CaRI Database Information