Last Reviewed: Dec. 3, 2018

Oregon State Cancer Registry

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Registry Data

Population Data

4,078,904Total Population Count
1.3%% of US Population
0.3%% of US Black Population
1.1%% of US API Population
3.6%% of US AI/AN* Population
0.9%% of US Hispanic Population
1.0%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

21,877Malignant Cases
1.3%% 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	No	No
Linkage Studies	Yes	No
Rapid Case Ascertainment Studies	No	No
Re-Abstracting/Patterns of Care Studies	No	No
Survival Studies	No	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

Oregon Public Health Institutional Review Board (IRB)

IRB Federalwide Assurance Number

00000520

IRB forms available online

Yes

IRB homepage URL

https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/INSTITUTIONALREVIEWBOARD/pages/index.aspx

Method to submit IRB forms

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://www.oregon.gov/oha/PH/DISEASESCONDITIONS/CHRONICDISEASE/CANCER/OSCAR/Pages/research.aspx

Method to submit Registry data request

Registry review meeting frequency

Quarterly

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.oregon.gov/oha/PH/DISEASESCONDITIONS/CHRONICDISEASE/CANCER/OSCAR/Pages/research.aspx

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

URL	Description
https://www.oregon.gov/oha/PH/DISEASESCONDITIONS/CHRONICDISEASE/CANCER/OSCAR/Pages/research.aspx

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

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

At end of study

Is notification of data destruction required

Yes

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

Confirmation of data destruction and date

Publication review requirements

60 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

30 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

IRB fees

IRB review fees required

Oregon CaRI Database Information