Last Reviewed: Dec. 19, 2022

California Cancer Registry

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Registry Data

Population Data

39,100,443Total Population Count
12.1%% of US Population
6.2%% of US Black Population
31.0%% of US API Population
15.4%% of US AI/AN* Population
26.5%% of US Hispanic Population
21.6%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

171,167Malignant Cases
10.0%% of US Malignant Cases

Registry type

NPCR/SEER

Year registry became population-based

1988

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

1988

Data linked with medicare

Years included in CINA Deluxe

1995-2015

CINA survial years

2008-2014

Participates in the National Interstate Data Exchange Agreement program

Yes (Restrictions - https://www.naaccr.org/national-interstate-data-exchange-agreement/#28)

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	Yes	No
Geospatial Studies	Yes	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)?

Yes

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

Both Registry and IRB

Local/State IRB Review Requirements

IRB of record

California Committee for the Protection of Human Subjects (CPHS)

IRB Federalwide Assurance Number

FWA00000681

IRB forms available online

Yes

IRB homepage URL

https://www.chhs.ca.gov/cphs/#irbmanager

Method to submit IRB forms

Online submission

Online IRB submission URL

https://www.chhs.ca.gov/cphs/#irbmanager

IRB meeting frequency

Every other month

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://www.ccrcal.org/retrieve-data/data-for-researchers/how-to-request-ccr-data/	fill form "Disclosure of Confidential Registry Data for Research" and submit CPHS approved study protocol (without Appendices).

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
http://www.ccrcal.org/Data_and_Statistics/Cancer_Data_for_Research.shtml	Site with links to detailed information on how to apply for individual-level CCR data

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

URL	Description
https://www.ccrcal.org/retrieve-data/data-for-researchers/how-to-request-ccr-data/	Site with PDFs of document and forms to be downloaded

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

Collaboration with local researcher required

Initial required documentation

Step-by-Step data request submission process

Other requirements and helpful information for researchers

Researcher should notify CCR via e-mail if CCR data is still needed to complete the approved study. Current approvals from CPHS and institutional IRB are required to retain the data . Please verify timeline for submission of application directly with CPHS.

Procedures are likely to be revised within the next year

Data Use and Renewal Requirements

When must study investigators destroy registry data

Annual justification to retain data is required; 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

CCR will provide the form.

Publication review requirements

N/A

Data use agreement renewal requirements

Only if there is a change of investigators.

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

Patient consent is obtained by

Researcher

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

None

Registry data payment is due

After researcher receives data

Registry fee structure summary

Contact CCR at hs-ccrresearch@ou.ad3.ucdavis.edu for current fees. Fees for data linkages depend on the number of records to be linked and, if statewide files other than CCR (birth, hospital discharge, etc.) fees depend on the number of records and the number of years of statewide data to be linked.

Registry fee structure URL

https://www.ccrcal.org/retrieve-data/data-for-researchers/data-preparation-costs/

IRB fees

IRB review fees required

California CaRI Database Information