Last Reviewed: Oct. 30, 2024

Hawaii Tumor Registry

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Registry Data

Population Data

1,421,827Total Population Count
0.4%% of US Population
0.1%% of US Black Population
5.0%% of US API Population
0.0%% of US AI/AN* Population
0.3%% of US Hispanic Population
1.5%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

7,393Malignant Cases
0.4%% of US Malignant Cases

Registry type

SEER

Year registry became population-based

1973

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

1973

Data linked with medicare

Yes

Years included in CINA Deluxe

1995-2015

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	Yes
Geospatial Studies	Yes	Yes
Linkage Studies	Yes	Yes
Rapid Case Ascertainment Studies	Yes	Yes
Re-Abstracting/Patterns of Care Studies	Yes	Yes
Survival Studies	Yes	Yes

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

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

University of Hawaii

IRB Federalwide Assurance Number

00003526

IRB forms available online

Yes

IRB homepage URL

https://www.hawaii.edu/researchcompliance/human-studies

Method to submit IRB forms

Online submission

Online IRB submission URL

https://www.hawaii.edu/researchcompliance/irb-eprotocol

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

No URLs specified.

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)

No URLs specified.

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

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

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

Please notify by email to: htr@cc.hawaii.edu

Publication review requirements

60 days in advance

Data use agreement renewal requirements

None

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

Yes

Registry data fee exceptions

Registry data payment is due

After researcher receives data

Registry fee structure summary

Fee is $50/hour.

Registry fee structure URL

IRB fees

IRB review fees required

Hawaii CaRI Database Information

Hawaii Tumor Registry

Registry Data

Study Participation

Contact Information

Required Review(s) and Initial Contact

Local/State IRB Review Requirements

Registry Review Requirements

Process

Data Use and Renewal Requirements

Consent Requirements

Registry fees

IRB fees