Last Reviewed: Nov. 28, 2022

Cancer Data Registry of Idaho

Print Full Details

Registry Data

Population Data

1,652,828Total Population Count
0.5%% of US Population
0.0%% of US Black Population
0.2%% of US API Population
0.7%% of US AI/AN* Population
0.4%% of US Hispanic Population
0.3%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

7,976Malignant Cases
0.5%% of US Malignant Cases

Registry type

NPCR/SEER

Year registry became population-based

1971

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

1980

Data linked with medicare

Yes

Years included in CINA Deluxe

CINA survial years

Participates in the National Interstate Data Exchange Agreement program

Yes (Restrictions - https://www.naaccr.org/national-interstate-data-exchange-agreement/#4)

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	Yes	Yes
Geospatial Studies	Yes	Yes
Linkage Studies	Yes	Yes
Rapid Case Ascertainment Studies	No	No
Re-Abstracting/Patterns of Care Studies	Yes	Yes
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://idcancer.org/ContentFiles/CDRI_Data_Release_Policy.pdf	Description of registry data release processes

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.idcancer.org/ContentFiles/CDRI_Data_Release_Policy.pdf	Cancer Data Registry of Idaho data release policy

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

URL	Description
https://www.idcancer.org/researchresources	Data Use Agreement included in Confidential Data Research Application

Process

Processing timeframe for linkage studies and de-identified data release

1 - 3 months

Processing timeframe for patient contact studies

1 - 3 months

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

Human subjects review and, if required, IRB approval from the investigator's institution is required prior to review of the registry research application.

Procedures are likely to be revised within the next year

Yes

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

The <institution> hereby represents and warrants that it has destroyed all Cancer Data Registry of Idaho data (in all formats including backup media in any location, including development, application, and analysis servers, etc.) that contain or may be linked to protected health information and/or personal identifiers. <institution> further represents and warrants that it has followed the regulations for proper disposal of electronic protected health information and reuse of electronic media set forth in HIPAA/HITECH.

Publication review requirements

30 days in advance

Data use agreement renewal requirements

3 years

IRB progress report requirements

None

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

30 days

Participates in VPR

Yes

Consent Requirements

Physician consent is required before patient contact

Yes - Passive

Physician consent is obtained by

Depends on Study

Patient consent is obtained by

Depends on Study

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

$100/hr staff plus supplies/other direct costs, or per-project as negotiated

Registry fee structure URL

IRB fees

IRB review fees required

Idaho CaRI Database Information