Last Reviewed: Nov. 22, 2024

Fred Hutchinson Cancer Research Center

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Registry Data

Population Data

5,025,437Total Population Count
1.6%% of US Population
0.7%% of US Black Population
3.3%% of US API Population
4.1%% of US AI/AN* Population
0.9%% of US Hispanic Population
1.3%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

26,947Malignant Cases
1.6%% of US Malignant Cases

Registry type

SEER

Year registry became population-based

1974

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

1974

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

Fred Hutchinson Cancer Center

IRB Federalwide Assurance Number

FWA00001920

IRB forms available online

Yes

IRB homepage URL

https://extranet.fredhutch.org/en/u/irb.html?_ga=2.111830916.1603761893.1543247240-1441100703.1450216316

Method to submit IRB forms

IRB meeting frequency

Weekly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://www.fredhutch.org/en/research/divisions/public-health-sciences-division/research/epidemiology/cancer-surveillance-system.html

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://www.fredhutch.org/en/research/divisions/public-health-sciences-division/research/epidemiology/cancer-surveillance-system.html	Obtaining CSS data for fesearch

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

No URLs specified.

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

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

Publication review requirements

N/A

Data use agreement renewal requirements

None

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

Patient consent is obtained by

Researcher

Pediatric research special requirements

Yes

Describe pediatric research considerations

Children and those individuals who are not competent to provide consent should be given the opportunity to assent to participate in the research project. Assent is a knowledgeable agreement to participate in the project. Adequate provisions should be made for soliciting the independent, non-coerced assent from children or cognitively impaired persons who are capable of a knowledgeable agreement. In general, the IRB recommends that children age seven and older, and most cognitively impaired adults, be given the opportunity to assent.

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

Information not available

Registry fee structure URL

IRB fees

IRB review fees required

Yes

Irb data fee exceptions

IRB fee amounts

https://extranet.fredhutch.org/en/u/irb/irb-fees.html

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